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MS Connections Jan 2010.indd - Multiple Sclerosis Society of Canada

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<strong>Connections</strong><br />

Winter 2010<br />

A newsletter connecting Albertans who want to end <strong>MS</strong> • www.mssociety.ca/alberta<br />

CCSVI<br />

and <strong>MS</strong><br />

Love Knows<br />

No Bounds<br />

Caring for a loved<br />

one with <strong>MS</strong><br />

13<br />

Lethbridge<br />

College Student<br />

Shares Her<br />

‘<strong>MS</strong> Story’<br />

New Chair<br />

presents<br />

Past Chair<br />

with Award in<br />

Calgary<br />

3 6<br />

14<br />

16<br />

2009<br />

Annual<br />

Awards


<strong>MS</strong> <strong>Connections</strong> is published quarterly<br />

by the <strong>MS</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong>, Alberta<br />

Division. It is intended to provide news and<br />

information for Albertans with <strong>MS</strong>, their<br />

families, caregivers, medical pr<strong>of</strong>essionals<br />

and other stakeholders. The information<br />

and opinions contained in this newsletter<br />

are obtained from sources believed to<br />

be reliable, but their accuracy cannot be<br />

guaranteed. We value your comments,<br />

feedback and reprint requests—please<br />

email them to info.alberta@mssociety.ca<br />

or call us at the numbers listed below.<br />

<strong>MS</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong><br />

Alberta Division<br />

Managing Editor, Darrel Gregory<br />

darrel.gregory@mssociety.ca<br />

Editor, Angie Wight<br />

angie.wight@mssociety.ca<br />

2009/2010<br />

Board <strong>of</strong> Directors<br />

Board Chair: James Orr<br />

1st Vice Chair: Carey Mogdan<br />

2nd Vice Chair & Chair, Fund<br />

Development Committee: Kevin O’Neil<br />

Past Chair: Suzanne Deschamps<br />

Treasurer: Dustin Sundby<br />

Secretary: Lesley Turnbull<br />

Chair, Client Services Committee:<br />

Judy Gordon<br />

Chair, Government & Community<br />

Relations Committee: Joan Ozirny<br />

MEMBERS-AT-LARGE<br />

Darrel Frisken<br />

Lynne Sangster<br />

Doreen Saunderson<br />

Bernie Buzik<br />

Wayne Jacques<br />

Melanee Framp<br />

Hazel Flewwelling<br />

Gayelene Bonenfant<br />

Our Mission<br />

To be a leader in finding a<br />

cure for multiple sclerosis and<br />

enabling people affected by <strong>MS</strong><br />

to enhance their quality <strong>of</strong> life.<br />

Contact Us<br />

#150, 9405 - 50 Street<br />

Edmonton, Alberta T6B 2T4<br />

Phone: (780) 463-1190<br />

Toll-free: 1-800-268-7582<br />

Fax: (780) 479-1001<br />

Email: info.alberta@mssociety.ca<br />

www.mssociety.ca/alberta Neil Pierce, President, Alberta Division<br />

2 <strong>MS</strong> <strong>Connections</strong> Winter 2010<br />

Disclosure a personal decision<br />

Happy New Year and thanks to everyone<br />

who supported the work <strong>of</strong> the <strong>MS</strong><br />

<strong>Society</strong> in Alberta over the past year. As<br />

you read the 2008-2009 Annual Report<br />

(abridged version), which is included<br />

as a special insert to this issue <strong>of</strong> <strong>MS</strong><br />

<strong>Connections</strong>, you will see that we had<br />

another good year. Revenues matched the<br />

prior year which was our best year ever<br />

while services were expanded to assist<br />

many more people living with the disease in Alberta. At the same time, $2 million was<br />

contributed by Alberta to the national <strong>MS</strong> research program.<br />

As great as our financial results are, what’s really impressive are the stories <strong>of</strong> courage<br />

and inspiration that many people with <strong>MS</strong> experience everyday. At our recent Annual<br />

General Meeting and Awards Banquet in Calgary, there were many moving stories as<br />

we recognized our provincial award winners and top fundraisers. I dare say there wasn’t<br />

a dry eye in the room at various points throughout the program. There was one story in<br />

particular that I wish to share because I think it’s one that everyone can relate to.<br />

It’s a story about one <strong>of</strong> our new top fundraisers who raised over $16,000 in his first<br />

year riding in the RONA <strong>MS</strong> Bike Tour (Leduc to Camrose) this past year. When asked<br />

why he got involved, Don said it was to support his wife who was recently diagnosed<br />

with <strong>MS</strong>. Riding in the Tour also helped Don overcome his feelings <strong>of</strong> helplessness; it<br />

was a tangible way to make a difference. To his amazement, within hours <strong>of</strong> asking his<br />

friends, family and colleagues to join his fight to end <strong>MS</strong>, he received text notifications<br />

<strong>of</strong> financial pledges from everyone who wanted to help.<br />

When I heard Don’s story, it struck me that people genuinely want to help whenever<br />

they can. However, they are not always given an opportunity, since many people don’t<br />

like to ask for help or disclose the fact that they are living with <strong>MS</strong>. For those who have<br />

made the decision to share this knowledge with family, friends and even colleagues,<br />

it’s heartwarming to know that people do want to help and you are not alone in your<br />

personal fight against the disease.<br />

I share this story in the event that you are struggling with a decision <strong>of</strong> whether to<br />

disclose the knowledge that you live with <strong>MS</strong>. Should you need us, the <strong>MS</strong> <strong>Society</strong><br />

is here to <strong>of</strong>fer support, guidance and hope. And if you don’t need us, perhaps you<br />

can help us. Join a walk or bike tour in your community. If you’re already a walker or<br />

cyclist, bring a friend to join you in 2010. As Dr. John Mullen, a top fundraiser in our<br />

Mountain Bike Tour, said: imagine what we could achieve if we all brought a friend out<br />

to help us raise funds for <strong>MS</strong> research and services through one <strong>of</strong> our many events.<br />

While the economic forecast appears more optimistic for industry in 2010, it is less so<br />

for the voluntary sector where revenue is expected to decline. We want to continue<br />

bucking this trend and sustaining the incredible momentum that you will read about in<br />

this issue <strong>of</strong> <strong>MS</strong> <strong>Connections</strong> along with the annual report enclosed. To do this, we will<br />

need the help <strong>of</strong> many more people. We can do this by reaching out and asking the<br />

people who care about us to help.


Loves knows no bounds<br />

Caring for a loved one with <strong>MS</strong><br />

For Craig Anderson, “for better or<br />

worse, in sickness and in health”<br />

has a different meaning. In 1993,<br />

Sandi, his wife <strong>of</strong> 18 years, was diagnosed<br />

with progressive multiple sclerosis. His<br />

children, Brandi, Dapheni, and Derrek,<br />

were in the throes <strong>of</strong> mid to early<br />

adolescence. Craig had a lot <strong>of</strong> thoughts<br />

go through his head at the time, but one<br />

thought kept coming back to him, time<br />

and time again. He had a job to do.<br />

“One <strong>of</strong> the biggest<br />

challenges was<br />

getting Sandi used<br />

to the idea over the<br />

first ten years that<br />

she couldn’t quite<br />

do everything to<br />

now, over the last<br />

six years, accepting<br />

that she can do very<br />

little.”<br />

“We really didn’t know what to<br />

expect,” says Craig. “It was new to<br />

Sandi, new to me and new to our kids.<br />

All we really understood was that things<br />

were going to change now.” Craig has<br />

been Sandi’s constant and <strong>of</strong>ten primary<br />

caregiver for the past 16 years. Sandi was<br />

a stay-at-home mom in Grimshaw, just<br />

over 500km northwest <strong>of</strong> Edmonton.<br />

Once active in the community, at the<br />

local school, and a busy Girl Guide leader,<br />

Sandi’s progressive <strong>MS</strong> has followed a<br />

common course. “Her symptoms, her<br />

overall condition, have gone from a mild<br />

limp, and other small impairments, to<br />

Craig and Sandi, seen here enjoying time with their grandchildren, Shaine and<br />

Noah.<br />

now being confined to a wheelchair. It<br />

seemed like after each attack, each<br />

progression, things got a little worse<br />

each time,” said Craig. “It was always a<br />

period <strong>of</strong> adjustment, a period <strong>of</strong> change.<br />

One <strong>of</strong> the biggest challenges was<br />

getting Sandi used to the idea over the<br />

first ten years that she couldn’t quite do<br />

everything to now, over the last six years,<br />

accepting that she can do very little.”<br />

Craig’s day begins as he rises at<br />

4:30am to get ready for the day ahead.<br />

A long-time employee in the parts<br />

department at the Daishowa Marubeni<br />

International Pulp Mill, over 45 minutes<br />

from his home, Craig awakens Sandi at<br />

six each morning. “I spend half an hour<br />

getting her ready to wait the three hours<br />

for her homecare to arrive at nine. We<br />

use Lifeline to cover <strong>of</strong>f those two and a<br />

half hours.” A busy work day ends and<br />

Craig returns home at six each evening.<br />

Now empty nesters, Craig prepares<br />

dinner for the two <strong>of</strong> them, and after<br />

exercising and giving Sandi a bath, they<br />

relax over a game <strong>of</strong> cards or take in<br />

some television before retiring to bed by<br />

9:30 or 10:00pm.<br />

Weekends are reserved for special<br />

events for the Andersons. Trips to visit<br />

their children and grandchildren, Shaine<br />

and Noah, in Edmonton and Grande<br />

Prairie, attend hockey games in the<br />

winter; get out for walks in the beautiful<br />

Alberta spring, summers and falls;<br />

gardening and <strong>of</strong> course visiting friends in<br />

Grimshaw and Peace River. “The winters<br />

are tougher,” said Craig.<br />

...continued on page 7<br />

<strong>MS</strong> <strong>Connections</strong> Winter 2010 3


PEER LINK provides informal<br />

support over the phone<br />

“It takes one to know one” is what<br />

the Peer Link program is all about.<br />

Traditionally, Peer Link programs connect<br />

people face-to-face to provide learning<br />

and support. However, sometimes<br />

people desire a more informal and<br />

convenient way to connect with<br />

<strong>MS</strong> peers.<br />

Alberta Division has<br />

started a PEER LINK program<br />

that <strong>of</strong>fers follow-up support<br />

and consultation to all<br />

Edmonton-and-area clients,<br />

family members and health<br />

pr<strong>of</strong>essionals who contact the<br />

society by e-mail, phone or in person.<br />

How will it work? When a client<br />

contacts the <strong>Society</strong> they will be asked<br />

for permission to have someone call<br />

them back to inquire how they are doing,<br />

4 <strong>MS</strong> <strong>Connections</strong> Winter 2010<br />

what their experience with the <strong>Society</strong><br />

was like, how else we can help them, and<br />

perhaps some suggestions<br />

for how they could<br />

help us in our<br />

mission<br />

towards<br />

a cure<br />

and<br />

enhanced<br />

quality <strong>of</strong> life.<br />

Once the<br />

client, family member<br />

or health pr<strong>of</strong>essional agrees<br />

to be contacted, their information<br />

will be forwarded to either Alvina, who<br />

has lived well with <strong>MS</strong> for many years,<br />

or Jeannine, a former <strong>MS</strong> Clinic Nurse<br />

and <strong>MS</strong> <strong>Society</strong> staff member. Alvina<br />

and Jeannine are easy to talk to and well<br />

A bequest in your will<br />

Providing for a better tomorrow<br />

A<br />

bequest in your will today can<br />

make such a significant impact<br />

for the future. It is a commitment<br />

to support the <strong>MS</strong> <strong>Society</strong> – and people<br />

You can direct your bequest to a<br />

specific purpose such as client services<br />

or <strong>MS</strong> research.<br />

living with <strong>MS</strong> – for years beyond your<br />

lifetime. Bequests allow you to make a<br />

long-term pledge without affecting your<br />

current financial status, and you can<br />

direct your bequest to a specific purpose<br />

such as client services or <strong>MS</strong> research.<br />

After you have provided for your<br />

loved ones, you may choose to name<br />

the <strong>MS</strong> <strong>Society</strong> as a beneficiary <strong>of</strong> a<br />

remaining portion <strong>of</strong> your estate. For<br />

many individuals, a bequest may be the<br />

most realistic way to make a significant<br />

donation to the <strong>MS</strong> <strong>Society</strong>. A bequest<br />

may also serve as a lasting memorial <strong>of</strong><br />

your generosity. In addition, bequests<br />

are eligible for tax receipts that can be<br />

applied against the taxable income <strong>of</strong><br />

your estate in the year <strong>of</strong> passing and the<br />

previous year.<br />

By including the <strong>MS</strong> <strong>Society</strong>, you<br />

versed in all aspects <strong>of</strong> living with <strong>MS</strong>, or<br />

finding referrals for whatever help may be<br />

needed.<br />

We look forward to your initial call,<br />

and assure you that PEER LINK is never<br />

too busy to get back to you to chat about<br />

<strong>MS</strong> or any related challenge you are facing.<br />

Find a friend – contact the <strong>MS</strong> <strong>Society</strong> and<br />

let the PEER LINK call you back!<br />

Jeannine<br />

Christopherson<br />

Alvina Hughes<br />

become a member <strong>of</strong> the Evelyn Opal<br />

<strong>Society</strong> which was created in honour <strong>of</strong><br />

the founding member <strong>of</strong> the <strong>MS</strong> <strong>Society</strong><br />

<strong>of</strong> <strong>Canada</strong>. Mark Mahl and George<br />

Jacob would be pleased to welcome<br />

you as we strive to provide funding for<br />

<strong>MS</strong> researchers, as well as for the best<br />

possible support for those with <strong>MS</strong>.<br />

For more information, please<br />

contact:<br />

North <strong>of</strong> Red Deer:<br />

Mark Mahl; 780 440-8764; mark.<br />

mahl@mssociety.ca<br />

Red Deer and South:<br />

George Jacob; 403 250-7090;<br />

george.jacob@mssociety.ca


Bayer Healthcare <strong>Canada</strong> helps <strong>MS</strong> <strong>Society</strong> provide<br />

education to Albertans<br />

For over a decade Berlex <strong>Canada</strong><br />

(since amalgamated with Bayer<br />

Healthcare <strong>Canada</strong>) has partnered<br />

with the <strong>MS</strong> <strong>Society</strong> to sponsor<br />

information and research sessions<br />

across Alberta worth over $50,000. In<br />

2002, the pharmaceutical company held<br />

a Health Pr<strong>of</strong>essional Symposium in<br />

Grande Prairie and Peace River with over<br />

70 people in attendance. A <strong>MS</strong> Health<br />

Pr<strong>of</strong>essionals<br />

Symposium in<br />

2005 drew over<br />

150 people.<br />

“We especially<br />

appreciate Bayer<br />

Healthcare<br />

<strong>Canada</strong>’s funding<br />

for rural outreach<br />

Ryan Schulha makes<br />

sure that health<br />

pr<strong>of</strong>essionals receive<br />

current information.<br />

and support,” said<br />

Adeline Blumer,<br />

Director <strong>of</strong> Client<br />

Services, <strong>MS</strong><br />

<strong>Society</strong> <strong>of</strong> <strong>Canada</strong>,<br />

Alberta Division. “It’s more difficult for<br />

people with <strong>MS</strong> in rural communities to<br />

see a neurologist, so any information we<br />

can provide is extremely beneficial.”<br />

Ryan Schulha, with Bayer Healthcare<br />

<strong>Canada</strong>, is eager to provide health care<br />

pr<strong>of</strong>essionals with the latest information<br />

regarding its <strong>MS</strong> therapy – Betaseron.<br />

“I meet with doctors and nurses and<br />

provide them with educational updates<br />

and information around Betaseron to<br />

allow them and their patients to make<br />

decisions that are best for the patient,” he<br />

says.<br />

Recently, Ryan attended the first<br />

annual <strong>MS</strong> <strong>Connections</strong> Conference in<br />

Edmonton. “I enjoyed it a lot, especially<br />

since it was on a local level,” he said. “I<br />

don’t interact a lot with patients, but it<br />

was very encouraging to see and hear<br />

some <strong>of</strong> the stories that came back on<br />

how good they’re doing. It’s nice to put a<br />

face to the story.”<br />

Bayer Healthcare <strong>Canada</strong> continues<br />

Calgary & Area Chapter Wins Award!<br />

The Calgary & Area Chapter <strong>of</strong> the <strong>Multiple</strong> <strong>Sclerosis</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong><br />

was awarded the Donner Canadian Foundation Award for Excellence in<br />

the Delivery <strong>of</strong> Services to People with Disabilities. This award <strong>of</strong> $2,500<br />

recognizes Calgary & Area Chapter as the top social service agency in <strong>Canada</strong><br />

serving people with disabilities.<br />

to play an important role in helping <strong>MS</strong><br />

patients make well-informed decisions<br />

when it comes to their drug therapies. “I<br />

think the most important thing for 2010<br />

is to continue providing cutting edge<br />

information to health care pr<strong>of</strong>essionals<br />

and patients living with <strong>MS</strong> in order to<br />

manage the disease as best as possible,”<br />

said Ryan.<br />

A special thank<br />

you to our<br />

pharmaceutical<br />

sponsors in 2009<br />

Special thanks to Serono EMD<br />

Sponsorship went towards an Exercise<br />

and <strong>MS</strong> information session in Grande<br />

Prairie with over 50 healthcare providers<br />

attending and 7 telehealth locations<br />

logging in. A second session was held for<br />

clients and the public. A spring session in<br />

Yellowknife promises to bring together the<br />

<strong>MS</strong> community for a new launch <strong>of</strong> client<br />

and family support.<br />

Special thanks to Biogen <strong>Canada</strong> IDEC<br />

Sponsorship grants provided <strong>MS</strong><br />

information events to clients with <strong>MS</strong>,<br />

families and health pr<strong>of</strong>essionals in<br />

Medicine Hat, Brooks, Lethbridge, Hinton<br />

and Wainwright regions. Wainwright also<br />

held an <strong>MS</strong> Clinic with a neurologist which<br />

was much appreciated by local clients.<br />

Special thanks to Pfizer<br />

Sponsorship went towards the <strong>MS</strong><br />

Community Advisory Council and the <strong>MS</strong><br />

Ambassador Project.<br />

Special thanks to Bayer Healthcare<br />

<strong>Canada</strong> Inc; Biogen <strong>Canada</strong> IDEC; Serono<br />

EMD; Bio<strong>MS</strong>; <strong>Canada</strong> Safeway Pharmacy<br />

For sponsoring the largest and most<br />

successful client conference in the history<br />

<strong>of</strong> Alberta Division in October, 2009.<br />

<strong>MS</strong> <strong>Connections</strong> Winter 2010 5


My<br />

<strong>MS</strong><br />

A personal account <strong>of</strong> one person’s<br />

challenge living with <strong>MS</strong><br />

Morgan Lencucha<br />

Lethbridge, AB<br />

My name is Morgan Lencucha<br />

and I’m here to talk about my<br />

journey as a young adult with<br />

relapsing remitting <strong>MS</strong>.<br />

I remember when I first started getting<br />

symptoms. I was very tired all the<br />

time, my memory <strong>of</strong>ten lapsed and my<br />

left eye wandered. I was scared <strong>of</strong> what<br />

was going on; the doctor had an idea<br />

but wasn’t sure enough without tests<br />

to confirm anything. He told my family<br />

and I that he thought it was multiple<br />

sclerosis. We were all shocked and<br />

scared; we’d seen the results <strong>of</strong> <strong>MS</strong> but<br />

were happy it wasn’t something worse.<br />

With the help <strong>of</strong> my concerned doctor, I<br />

was quickly sent <strong>of</strong>f to Foothills hospital<br />

for nearly a week where they ran test<br />

after test and I consumed nearly 80 pills<br />

a day. I’d never been in the hospital for<br />

anything major before and I was terrified.<br />

Although I had a great family and<br />

boyfriend by my side almost every day, I<br />

had to spend my nights alone and cried<br />

myself to sleep every day while I was<br />

there, and for months after, wondering<br />

why this had happened to me.<br />

This all happened a week before I<br />

was scheduled to take my high school<br />

diplomas.<br />

Since then, I’ve had 5 major attacks<br />

affecting my arms, legs and memory<br />

and numerous mini attacks like twitches,<br />

tingling, numbness, memory problems,<br />

etc. It’s hard to maintain a normal<br />

demeanor with something always acting<br />

weird in my body. I’m constantly sick<br />

and in my program it’s impossible to<br />

6 <strong>MS</strong> <strong>Connections</strong> Winter 2010<br />

Story<br />

get any rest. I’m currently a second-year<br />

Fashion Design and Marketing student<br />

at the college in Lethbridge. My program<br />

is very demanding; I’m there from 10am<br />

until 5pm every day with numerous hours<br />

<strong>of</strong> homework on top <strong>of</strong> that. These hours<br />

have cut back on my workout routine; I<br />

try to work out 3 times a week to keep<br />

my stress levels down but with such a<br />

stressful program with short deadlines<br />

It’s always hard<br />

to tell people for<br />

the first time that<br />

I have <strong>MS</strong> because<br />

<strong>of</strong> the emotions<br />

attached to the<br />

disease.<br />

and many projects, that’s basically impossible.<br />

I also had to give up pursuing my<br />

modeling dream, but being in the fashion<br />

program gave me back a piece <strong>of</strong> that.<br />

Although I’m getting back into the<br />

routine <strong>of</strong> things now that I’ve been major<br />

attack-free for almost a year, I sometimes<br />

wonder if I’ll even completely return to<br />

my normal life. Because <strong>of</strong> how tired I<br />

always am, especially during attacks, and<br />

my constant dizziness and instability, I<br />

had to drop out <strong>of</strong> dance and violin; both<br />

passions I’ve been pursuing since I was a<br />

kid. I also got fired from my favorite job<br />

because they didn’t believe that I had the<br />

disease and I lost friends through a bout<br />

<strong>of</strong> depression. I find that even though I<br />

can’t do those things with the intensity I<br />

Morgan Lencucha is determined to<br />

follow her dreams.<br />

had before my disease, I’ve now started<br />

pursuing modified versions <strong>of</strong> them<br />

again. My boyfriend and I are taking<br />

a modern country swing class at the<br />

university and I got my violin tuned last<br />

week. I also went back to school after<br />

a year <strong>of</strong>f and have started dipping<br />

my feet into plus size modeling. Even<br />

though I become stressed out through<br />

these activities, I’m more stressed<br />

when I’m doing nothing. I need to<br />

be constantly active to feel a sense <strong>of</strong><br />

calm.<br />

It’s always hard to tell people for<br />

the first time that I have <strong>MS</strong> because <strong>of</strong><br />

the emotions attached to the disease.<br />

In my experiences, people have outright<br />

told me I couldn’t have <strong>MS</strong> because it’s<br />

an older person’s disease. Some have<br />

laughed at me in disbelief because I’m<br />

not in a wheelchair, am under 40 and<br />

because I live a seemingly normal life.<br />

What those people don’t understand<br />

is that <strong>MS</strong> isn’t biased to those it hits;<br />

there’s no age restraint on who it<br />

...continued on page 10


Ask<br />

Jeannine<br />

It’s hard not to feel angry and<br />

frustrated. It’s true we <strong>of</strong>ten hear<br />

about new treatments or new<br />

research for <strong>MS</strong> but when we ask<br />

questions about it the answer we get is<br />

that it is being tested on animals so it is<br />

at a very early stage <strong>of</strong> research.<br />

When you hear about new<br />

developments in research<br />

it usually is<br />

because a<br />

new paper has<br />

been published<br />

and the topic<br />

has been<br />

discussed at<br />

a conference.<br />

Often preliminary research<br />

shows potential for future treatments<br />

but requires further study with larger<br />

numbers <strong>of</strong> test participants at several<br />

different centres.<br />

When you discuss these new<br />

developments with your doctor it is hard<br />

not to feel frustrated because you are<br />

<strong>of</strong>ten told you don’t fit the category or<br />

it is being tested on mice. When results<br />

are published by the news media they<br />

<strong>of</strong>ten make it sound like a cure has been<br />

found. When you hear this, look at the<br />

study to learn how many test subjects<br />

Jeannine Christopherson, a <strong>MS</strong> nurse and retired<br />

Outreach Coordinator with the <strong>MS</strong> <strong>Society</strong>, Edmonton<br />

Chapter, will answer your questions about <strong>MS</strong>.<br />

If you would like to ask Jeannine a question, email it to<br />

info.alberta@mssociety.ca or call the editor,<br />

Angie Wight, at 780-463-1190 or 1-800-268-7582.<br />

How do I keep from falling into the hope versus<br />

disappointment cycle whenever there is a new<br />

treatment advertised?<br />

were involved and for how long a period<br />

<strong>of</strong> time.<br />

When people with relapsingremitting<br />

<strong>MS</strong> are in a research trial they<br />

may naturally go into remission and can<br />

remain in remission for a year or several<br />

years. Another problem is the placebo<br />

effect; sometimes<br />

just<br />

because<br />

we are<br />

taking<br />

something<br />

or doing<br />

something<br />

different with<br />

our diet we get<br />

a feeling <strong>of</strong> well<br />

being that we<br />

attribute to the drug or the diet. Up to<br />

30% <strong>of</strong> people in a research program will<br />

have a placebo effect.<br />

So in order to avoid high expectations<br />

and a high disappointment, get the<br />

facts from your nurse or doctor and the<br />

<strong>MS</strong> <strong>Society</strong>. Also discussing research<br />

at a peer support group will help you<br />

understand research projects and will<br />

help alleviate anger and frustration as<br />

group members express different ideas<br />

and talking relieves frustration.<br />

Loves knows<br />

no bounds<br />

...continued from page 3<br />

When asked to reflect on his own<br />

contributions to his family, Craig said<br />

“You become much more <strong>of</strong> a stable,<br />

steady influence, a spokesperson, a<br />

leader. My roles have changed <strong>of</strong> course; I<br />

used to rely on Sandi to raise the children,<br />

almost exclusively, but it has seemed like,<br />

as there is more disability, the more the<br />

roles have changed.<br />

We have lost some friendships,<br />

because <strong>of</strong> this, sure. Your social activity<br />

as a couple decreases, we used to go<br />

camping quite a bit, but that stuff goes as<br />

you lose the ability to just pick up and go.”<br />

The one thing that has not<br />

changed since the mid 1990s is Craig’s<br />

commitment to the <strong>MS</strong> <strong>Society</strong> <strong>of</strong><br />

<strong>Canada</strong>. “The <strong>MS</strong> <strong>Society</strong> is basically the<br />

only thing I do, outside <strong>of</strong> my family,”<br />

says Craig. Serving as both President <strong>of</strong><br />

North Peace Chapter and Chairperson <strong>of</strong><br />

the North Peace Trail Ride, Craig began<br />

his relationship in 1995 as he and Sandi<br />

attended support groups. By 1999, he<br />

was president <strong>of</strong> the Chapter. “We are<br />

a small rural community. I guess if you<br />

show up, you get elected.”<br />

In 2007 he was asked to also take<br />

on the role <strong>of</strong> Chairperson for the<br />

North Peace Trail Ride. “I’ve had to stop<br />

riding now,” he says. “I’m just too busy<br />

doing the organizing and operations<br />

to get away.” The North Peace Trail<br />

Ride celebrated its 25th Anniversary<br />

in June, 2009. Over 90 riders raised<br />

over $49,000 in 2009, putting the ride<br />

well over $400,000 in funds raised for<br />

research and services in the event’s 25year<br />

history. “Nobody who does an event<br />

does it alone,” said Craig. “We had 40<br />

volunteers this year and it seems like<br />

every year more and more people are<br />

getting involved during the day and <strong>of</strong><br />

course during the whole year as well.”<br />

When asked what he would do after<br />

another successful but busy Trail Ride<br />

weekend, Craig remarked, “I dunno,<br />

probably just go and look after Sandi.”<br />

<strong>MS</strong> <strong>Connections</strong> Winter 2010 7


Caregivers treated to education<br />

and pampering<br />

Southeastern Chapter partners with other agencies to<br />

provide day-long session<br />

On November 16, 2009 the <strong>MS</strong><br />

<strong>Society</strong> <strong>of</strong> <strong>Canada</strong>, Southeastern<br />

Alberta Chapter, teamed up<br />

with several other local agencies to<br />

<strong>of</strong>fer a day <strong>of</strong> respite and education for<br />

local caregivers. Entitled “Taking your<br />

hands <strong>of</strong>f the wheel: Caregiving through<br />

transitional periods”, the program was<br />

hosted by the Canadian Paraplegic<br />

Association, Canadian Mental Health<br />

Association, Alzheimer <strong>Society</strong>, Canadian<br />

Cancer <strong>Society</strong>, Homecare Social Work,<br />

and the <strong>MS</strong> <strong>Society</strong>.<br />

The day began at Chinook Village in<br />

Medicine Hat with some much needed<br />

pampering for approximately 30 local<br />

caregivers, including: hand and back<br />

massage, aromatherapy, Reiki, nutritional<br />

information, stress therapy, heart health,<br />

and physical therapy. The morning <strong>of</strong><br />

pampering was followed by a light yoga<br />

session, a delicious buffet lunch, and an<br />

amazing afternoon workshop.<br />

The afternoon speaker, Carol<br />

Barwick from Hospice Calgary, provided<br />

caregivers with an opportunity to explore<br />

caregiver challenges, self care, identity,<br />

and grief issues. Carol had the group<br />

explore the unique types <strong>of</strong> caregiver<br />

identities, and focused on strengths and<br />

self reflection. Caregiver “burnout” is<br />

something that happens quite frequently,<br />

but is rarely addressed. In this workshop,<br />

Carol examined “burnout” and provided<br />

helpful suggestions for better selfmanaged<br />

care.<br />

The afternoon session provided<br />

reassurance and relief to family<br />

caregivers, and served as a reminder that<br />

they need to take time for themselves.<br />

Attendees responded to the question<br />

what did you learn from this course? One<br />

8 <strong>MS</strong> <strong>Connections</strong> Winter 2010<br />

Caregivers enjoy a relaxing massage during their pampering portion <strong>of</strong> their oneday<br />

program.<br />

replied “I learned to take care <strong>of</strong> myself,<br />

ask others for help, and not be so hard on<br />

myself. The feelings I feel are normal, I<br />

am not alone, and I can’t do everything.”<br />

Another attendee said “I will try to be<br />

gentler with myself, and not feel like I<br />

have to do it all. I will look for help.”<br />

Funding for this event<br />

was provided by: LEARN<br />

and Alberta Advanced<br />

Education and Technology<br />

The day proved to be a huge success<br />

with many different family caregivers<br />

coming together. The planning committee<br />

hopes to make this an annual event, and<br />

is eagerly looking to plan an even bigger<br />

event in the fall <strong>of</strong> 2010.<br />

The Southeastern<br />

Alberta Chapter is<br />

Moving!<br />

Beginning February 2, 2010, the<br />

new address will be:<br />

Southeastern Alberta Chapter<br />

101, 1201 Kingsway Ave SE,<br />

Medicine Hat , AB. T1A 2Y2


A rtists’ Corner<br />

<strong>MS</strong> allows local<br />

woman to find her<br />

artistic purpose<br />

Before <strong>MS</strong>, Andrea Anderson<br />

led a whirlwind life as a radio<br />

personality while simultaneously<br />

running the local radio station in Victoria.<br />

She was in radio for<br />

12 years before she<br />

was forced to give<br />

it up because <strong>of</strong> her<br />

<strong>MS</strong>. Not being one<br />

to be idle, Andrea<br />

enrolled in a couple<br />

<strong>of</strong> night classes<br />

with the idea <strong>of</strong><br />

Andrea Anderson trying to learn how<br />

to draw. After a couple<br />

<strong>of</strong> unsuccessful classes,<br />

she decided to teach<br />

herself how to draw. Six<br />

years later, she’s become<br />

a very well known local<br />

artist.<br />

“I find it very<br />

therapeutic. I like to sit<br />

in front <strong>of</strong> the TV and sometimes I can<br />

get so lost in my drawing. It just destresses<br />

me completely,” says Andrea.<br />

She started out drawing for herself,<br />

but after many requests, she does pet<br />

This pet portrait is one <strong>of</strong> many that can be found<br />

in Andrea’s 2010 calendar.<br />

Pincher Creek writer publishes book<br />

Trudy McLellan was diagnosed<br />

with <strong>MS</strong> in 1999. Originally from<br />

Ontario, she moved to Pincher<br />

Creek in 1998 with her husband Wayne<br />

and three children. Once in Alberta, the<br />

family added two new family members:<br />

horses named Penny and Centella. It was<br />

always Trudy’s dream to have horses,<br />

and Pincher Creek seemed to hold<br />

everything that she wanted in life. “It<br />

was hard for her<br />

to come all the<br />

way out to fulfill<br />

a dream, only to<br />

get diagnosed<br />

with secondary<br />

progressive <strong>MS</strong>,”<br />

said Wayne.<br />

Trudy lives in<br />

an assisted-<br />

living facility in<br />

Pincher Creek.<br />

“The people who work here<br />

are beautiful,” Trudy says <strong>of</strong><br />

the health pr<strong>of</strong>essionals in the<br />

facility.<br />

A couple years ago, Trudy<br />

felt a burning desire to write<br />

a novel and decided to share<br />

her love <strong>of</strong> horses and nature<br />

in a new book entitled Penny<br />

the Patient Pinto Pony. She<br />

worked hard to finish the novel,<br />

sometimes typing it one letter<br />

at a time on her laptop. Wayne<br />

edited for her and then together<br />

they found a publisher in the<br />

US to print it. They are now on<br />

the second printing. “It wasn’t<br />

done for money, it was done as<br />

a labour <strong>of</strong> love – for a sense <strong>of</strong><br />

accomplishment,” says Wayne.<br />

If you are interested in<br />

purchasing a copy <strong>of</strong> the book,<br />

portraits for friends, family, and also<br />

for hire. Andrea has also created a pet<br />

portraits calendar which she is selling.<br />

All <strong>of</strong> these can be seen on her website<br />

at www.petportraitsbyandi.ca.<br />

contact Trudy or her husband Wayne at<br />

tallymar@jrtwave.com or at 403-628-3392.<br />

Trudy and her husband, Wayne, worked<br />

together to fulfil Trudy’s dream <strong>of</strong> writing<br />

a novel.<br />

<strong>MS</strong> <strong>Connections</strong> Winter 2010 9


Leigh Mork, an employee<br />

<strong>of</strong> Suncor Energy, and his<br />

son Alex Mork, 2nd year<br />

university student, joined the<br />

ranks <strong>of</strong> <strong>MS</strong> Ambassadors this<br />

year. Leigh’s wife, and Alex’s mom,<br />

Jennifer was diagnosed with <strong>MS</strong><br />

nine years ago. In 2007, Leigh and<br />

Jennifer moved to Fort McMurray<br />

and discovered that there weren’t<br />

a lot <strong>of</strong> people to talk to about <strong>MS</strong>.<br />

Leigh signed up for the Enerflex <strong>MS</strong><br />

Walk in 2008 and raised $2000<br />

and Alex started volunteering for<br />

the Walk. So when Julie Kelndorfer<br />

from the <strong>MS</strong> <strong>Society</strong> – Alberta<br />

Division asked them if they<br />

were interested in becoming <strong>MS</strong><br />

Ambassadors, both Leigh and Alex<br />

jumped at the chance.<br />

“The most important thing about<br />

10 <strong>MS</strong> <strong>Connections</strong> Winter 2010<br />

A United Voice for the<br />

Cause and Cure<br />

Fort McMurray man becomes<br />

<strong>MS</strong> Ambassador<br />

His son also joins the cause<br />

being an <strong>MS</strong> Ambassador is making<br />

sure that people understand what <strong>MS</strong><br />

is,” said Leigh. “It’s a ‘hidden disease’<br />

– not a lot <strong>of</strong> people know what it<br />

is. It’s about getting all the individual<br />

pieces and parts working together for<br />

a goal that a few people alone can’t<br />

accomplish.”<br />

Alex completely agrees with this<br />

way <strong>of</strong> thinking. Even though university<br />

is a hard and stressful time, he still<br />

manages to help. “It’s important to get<br />

as many different people from different<br />

walks <strong>of</strong> life spreading the word. Dad<br />

reaches a lot <strong>of</strong> people from his work<br />

and I reach a lot <strong>of</strong> people through my<br />

school,” says Alex.<br />

Leigh and Alex have always worked<br />

well together, but now they are working<br />

together to help a cause that’s close to<br />

their hearts.<br />

My <strong>MS</strong> Story<br />

...continued from page 6<br />

affects. There’s not one face that exemplifi<br />

es <strong>MS</strong>. Like almost every other disease,<br />

it doesn’t just hit one type <strong>of</strong> person.<br />

The beauty <strong>of</strong> it is that no one can know<br />

you’re affected by the color <strong>of</strong> your skin,<br />

your age or your lifestyle. For me, telling<br />

people is still a decision. I just wish society<br />

wasn’t so naïve to the disease.<br />

Every day is a struggle; not only for<br />

me but for my family and loved ones. My<br />

mom worries about me more than the<br />

average mom worries about her child, my<br />

friends are scared for me every time I get<br />

sick or start acting weird and my poor<br />

boyfriend has to live with my oddities every<br />

day. It bothers me not being able to<br />

do regular date activities because I’m always<br />

so tired and, because I don’t get bad<br />

attacks constantly, he <strong>of</strong>ten forgets that<br />

I’m having an attack when I do get them;<br />

sometimes this is more painful than the<br />

attack for both <strong>of</strong> us.<br />

I don’t want to let my disease keep<br />

me from living a regular life and from following<br />

my dreams. I’m a fi rm believer<br />

that anyone can do almost anything if<br />

they put their mind to it. Dreaming is<br />

great and all, but doing is what really<br />

counts. Although it sometimes gets me<br />

down, I can’t allow myself to fully be suppressed<br />

by my disease. There’s still so<br />

much I can do; I’m super mobile, I go to<br />

school, maintain an active social life and<br />

try to stay active in my community. Have<br />

you ever seen the new <strong>MS</strong> commercial<br />

where it states all these things that man<br />

said would never happen, like man would<br />

never fl y and man would never reach<br />

the moon? The last thing it says is man<br />

will never fi nd a cure to <strong>MS</strong>. I try to hold<br />

out on the knowledge that one day there<br />

will be a cure. I fi nd negativity gets me<br />

nowhere and only gets me down. I get in<br />

ruts like anyone else, but I feel that I can’t<br />

stay low for very long because I never<br />

know what tomorrow may bring. Corny,<br />

but true.<br />

I thank you all for being here and<br />

helping to conquer the battle <strong>of</strong> <strong>MS</strong>.<br />

Without you, my story would fall upon<br />

deaf ears.


Lethbridge & District Chapter<br />

By Leanne Kindrat,<br />

Development Coordinator<br />

Lethbridge & District Chapter<br />

Our 2008/2009 fundraising year brought a lot <strong>of</strong> hope to<br />

the Lethbridge & District Chapter. We are very proud <strong>of</strong> our<br />

success and where the road has taken us. We had many new<br />

third party fundraisers this year and a lot <strong>of</strong> fun events that we<br />

either hosted or had the opportunity to attend in support <strong>of</strong><br />

ending <strong>MS</strong>.<br />

Client Services<br />

We are very excited to announce that our Client Services staff<br />

have introduced three new programs this year for people living<br />

with <strong>MS</strong> in our district.<br />

PROGRAM FOR ACTIVE LIVING (PAL)<br />

We partnered with the YWCA and other non-pr<strong>of</strong>i t<br />

organizations to develop a program for persons living with<br />

disabilities to increase their level <strong>of</strong> fi tness, agility and mobility<br />

in a non-threatening, friendly atmosphere. So far the program<br />

has been very popular and many <strong>of</strong> our clients have taken part<br />

in this six-week program.<br />

FRIENDLY VISITING<br />

Our part-time Administrative Assistant, Gail Sauter, began<br />

her friendly visits in March. This program <strong>of</strong>fers friendly<br />

visiting and conversation to persons with <strong>MS</strong> in long-term<br />

care facilities in Lethbridge on a monthly basis. This program<br />

has been well-received and it’s great to hear that people await<br />

Gail’s return.<br />

...A year in review<br />

YOUNG ADULTS GROUP (YADS)<br />

This is a group composed <strong>of</strong> young adults living with <strong>MS</strong><br />

and their friends or family members. The group meets<br />

once a month; sometimes in the <strong>of</strong>fi ce, sometimes with a<br />

speaker and sometimes at local restaurants for supper. It’s<br />

a great place for young people with <strong>MS</strong> to come share their<br />

experiences, thoughts, feelings and to fi nd out more about <strong>MS</strong><br />

and how the <strong>MS</strong> <strong>Society</strong> can help.<br />

WILLIAM WATSON LODGE ANNUAL EXCURSION<br />

This year 29 people participated in our 3 night, 4 day trip<br />

to the Kananaskis Country. This trip was combined with<br />

members and staff from Central Alberta Chapter, Lethbridge<br />

& District Chapter and Southeastern Chapter. A great way for<br />

clients to get out and enjoy nature as well as to socialize with<br />

other people living with <strong>MS</strong>.<br />

2009 CHRISTMAS SUPPER<br />

This year we enjoyed our Christmas Supper at the Lethbridge<br />

Lodge. The meal was fabulous; butternut squash soup to<br />

start, turkey and dressing as our main course and chocolate<br />

mousse for dessert. A perfect way to start the holiday season,<br />

celebrate the success <strong>of</strong> the past year, and look forward to a<br />

new year <strong>of</strong> hope!<br />

<strong>MS</strong> <strong>Connections</strong> Winter 2010 11


Lethbridge &<br />

District Chapter<br />

...continued<br />

Fund Development<br />

2009 ENERFLEX <strong>MS</strong> WALK<br />

Our 2009 Enerflex <strong>MS</strong> Walk was the best one yet! 754<br />

participants raised $195,574, including $10,600 in cash<br />

sponsorships, well surpassing our goal <strong>of</strong> $160,000. 58 teams<br />

raised 76.9% <strong>of</strong> this total and our top 10 list (individuals,<br />

corporate teams,<br />

friends & family<br />

teams) raised<br />

a remarkable<br />

$120,236.39. This<br />

year our Elite Feet<br />

Club consisted <strong>of</strong><br />

35 individuals and<br />

29 teams all raising<br />

$1,000+ each.<br />

Don’t forget to mark<br />

these dates on your<br />

calendars: Streak for<br />

<strong>MS</strong>, April 10, 2010,<br />

10 to 6pm, Park<br />

Place Mall Atrium;<br />

2010 Lethbridge<br />

& District Enerflex<br />

<strong>MS</strong> Walk, April 24,<br />

2010 8:30am Check-<br />

In/10am start.<br />

Brooks — June 6, 2010<br />

Calgary — June 6, 2010<br />

Drumheller — May 2, 2010<br />

Edmonton — May 16, 2010<br />

Fort McMurray — April 25, 2010<br />

Grande Prairie — May 2, 2010<br />

12 <strong>MS</strong> <strong>Connections</strong> Winter 2010<br />

Lethbridge — April 24, 2010<br />

Lloydminster — April 24, 2010<br />

Medicine Hat — May 30, 2010<br />

Red Deer — May 30, 2010<br />

St. Albert — April 25, 2010<br />

Lakeland Region — May 8, 2010<br />

Register in the walk nearest you: www.mswalks.ca<br />

PUMPKIN RUN<br />

On October<br />

26th we dropped<br />

pumpkins <strong>of</strong>f on<br />

the doorsteps<br />

<strong>of</strong> 32 <strong>of</strong> our top<br />

team captains. To<br />

encourage people<br />

to start fundraising<br />

early we included a<br />

fundraising package<br />

with tips and tools<br />

to get them well on<br />

their way. We also<br />

included 3 <strong>MS</strong> Walk pumpkin stencils so our team captains<br />

could continue spreading the word about ending <strong>MS</strong> on<br />

Halloween night. Ralph and Annie Heim spent an evening<br />

carving away and sent us this wonderful picture <strong>of</strong> Ralph<br />

with their <strong>MS</strong> pumpkin. What a great way to spread <strong>MS</strong><br />

awareness and to celebrate life living with <strong>MS</strong>.<br />

<strong>MS</strong> AWARENESS GAME NIGHT<br />

The University <strong>of</strong> Lethbridge Pronghorns basketball teams<br />

hosted an <strong>MS</strong> Awareness Game Night on Nov 21st. The<br />

turnout was great; their highest attendance to date! Pat<br />

Spencer and Chris Giles represented our Chapter and were<br />

on hand to answer any questions anyone had. $1 from every<br />

ticket sold for the game was donated back to the <strong>MS</strong> <strong>Society</strong><br />

for a total <strong>of</strong> $540! Thanks to Robb Engen for setting this up<br />

for us!<br />

ANGELS FOR <strong>MS</strong><br />

A local <strong>MS</strong> Angel, Joan Oldenberger, decided to do her part<br />

in the fight against <strong>MS</strong> through an opportunity Avon gave<br />

her to support a charity <strong>of</strong> her choice during a Christmas<br />

ornament campaign. The campaign, since named “Angels for<br />

<strong>MS</strong>”, raised over $700 for the <strong>MS</strong> <strong>Society</strong>. Thanks Joan!<br />

2010 Events<br />

Leduc to Camrose — June 12 & 13, 2010<br />

Calgary — June 12 & 13, 2010<br />

Central — June 12 & 13, 2010<br />

Mountain (Hinton) — September 11 & 12, 2010<br />

If you’ve got a bike, you’re ready to roll:<br />

www.msbiketours.com


Consolidated Annual Report • 2008 – 2009 • <strong>MS</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong>, Alberta Division<br />

Neil Pierce, President<br />

Alberta Division<br />

Boundary adjustment results in more effective<br />

access to <strong>MS</strong> services across the province<br />

Client Services has been expanding to improve access to <strong>MS</strong><br />

services in a very significant way. Alberta Division and Chapter<br />

staff are now responsible for a larger territory in Southern Alberta.<br />

Central Alberta and Edmonton Chapter will be expanding their<br />

territories in 2010. A new satellite service and staff member have<br />

been established in St. Paul. The service is funded through income<br />

generated from the 2nd year <strong>of</strong> the new Enerflex <strong>MS</strong> Walk in St.<br />

St. Paul’s Enerflex <strong>MS</strong> Walk resulted in new <strong>MS</strong> services in the community.<br />

I welcome this opportunity to provide the public with an accounting <strong>of</strong> how we spent<br />

the $6 million that was raised from 20,000 participants and more than 100,000 donors<br />

who supported the <strong>MS</strong> <strong>Society</strong> in Alberta. Given the economic environment in which we<br />

worked over the past year, it is a significant accomplishment to have matched last year’s<br />

financial results (after the one-time government end<strong>MS</strong> grant <strong>of</strong> $1.5 million is removed<br />

from the previous year). As you can see from the 2008-2009 consolidated income<br />

statement that follows, there was enough growth in special fundraising projects to <strong>of</strong>fset<br />

expected declines in direct mail and major gift income.<br />

This abridged version <strong>of</strong> the 2008-2009 Annual Report has been developed as a special<br />

insert to this issue <strong>of</strong> the <strong>MS</strong> <strong>Connections</strong> newsletter as a way to save costs and expand<br />

the readership.<br />

I welcome your questions and comments to the operations report and consolidated<br />

2008-2009 income statement attached. A complete set <strong>of</strong> annual financial statements<br />

for the year ending August 31, 2009 is available upon request.<br />

Paul. These proceeds also generated a sizable<br />

contribution to <strong>MS</strong> research which constitutes the<br />

other half <strong>of</strong> our mission. The efforts to raise funds<br />

and guide the delivery <strong>of</strong> services in the Lakeland<br />

Region was made possible through the leadership<br />

<strong>of</strong> volunteers who created the St. Paul Regional<br />

<strong>MS</strong> Advisory Council. This model has the potential<br />

to guide future expansion in other communities<br />

where the <strong>MS</strong> <strong>Society</strong> wishes to improve access to<br />

services and gain greater presence.<br />

New programs help us reach out to more<br />

people<br />

Additional outreach activities include the<br />

introduction <strong>of</strong> <strong>MS</strong> ActiveNOW to many <strong>of</strong> our<br />

Chapters. This exciting health promotion program<br />

is designed to develop intention for active living<br />

in persons with <strong>MS</strong>, educate health, fitness and<br />

lifestyle pr<strong>of</strong>essionals and ‘seed’ the growth <strong>of</strong><br />

more wellness opportunities for people affected<br />

by <strong>MS</strong>. The Edmonton Chapter deserves the<br />

credit for pioneering the development <strong>of</strong> this<br />

initiative. We are also equally proud <strong>of</strong> our Friendly


Visitation Program that has received annual funding from the<br />

Alberta Government. This new program allowed staff and volunteers<br />

to visit 90 young people throughout the year who live in long-term<br />

care in Edmonton and Calgary. These visits provide important<br />

social support and in addition may afford people the opportunity<br />

Friendly Visitors reach out to people with <strong>MS</strong> living in long-term care<br />

facilities.<br />

to engage in an <strong>MS</strong>-specific activity, including support groups. The<br />

smaller Chapters are also getting out more to visit as well. Readers<br />

are encouraged to view the Global Edmonton video on the Alberta<br />

Division website (search for ‘Friendly Volunteers’) to learn more<br />

about the value <strong>of</strong> this new outreach service.<br />

Alberta at the forefront <strong>of</strong> <strong>MS</strong> research activity<br />

There were also many exciting developments in research this<br />

past year. Most notable was the announcement that Alberta was<br />

selected as one <strong>of</strong> five <strong>MS</strong> Regional Research and Training Centres<br />

(RRTC) across the country that will be supported through the<br />

Alberta will host one <strong>of</strong> five <strong>MS</strong> Regional Research and Training Centres<br />

across the country.<br />

National end<strong>MS</strong> Campaign. The Alberta<br />

RRTC is a partnership between three Alberta<br />

universities. Of significance to Albertans is<br />

the knowledge that over $2 million <strong>of</strong> the<br />

designated Campaign funds raised in our<br />

province, including the Alberta Government<br />

grant <strong>of</strong> $1.5 million, has now been committed<br />

to this partnership. The total research<br />

contribution from Alberta for fiscal 2009 is<br />

almost $2 million compared to $4.1 million<br />

last year. Once you remove the $1.5 million<br />

one-time government grant, the shortfall<br />

in our research contribution is just under<br />

$600,000. Much <strong>of</strong> this shortfall was a result<br />

<strong>of</strong> a downturn in one <strong>of</strong> our bike tours. In<br />

addition, funds were invested in Client Services<br />

to expand program and service delivery. This<br />

smaller research contribution is in line with the<br />

balanced spending policy. The 2009 ratios are<br />

56% research and 44% services.<br />

Provincial <strong>MS</strong> task force advocated<br />

At a macro-community level, the creation<br />

<strong>of</strong> the <strong>MS</strong> Community Advisory Council and<br />

the subsequent development <strong>of</strong> Moving<br />

Forward Together submission to government<br />

is intended to improve the delivery <strong>of</strong> <strong>MS</strong> care<br />

and support services. The submission calls for<br />

a provincial Working Group <strong>of</strong> government,<br />

community and health providers to develop a<br />

better coordinated and enhanced system <strong>of</strong> <strong>MS</strong><br />

care and support services, particularly in rural<br />

Alberta. This important endeavor is well worth<br />

it because we believe this is the right time to<br />

influence change; an almost perfect storm in<br />

many ways. I describe it this way because the<br />

<strong>MS</strong> community, together with government and<br />

health care, will have to find ways to work more<br />

collaboratively in the future given the scarce<br />

resources we all face; combined with the<br />

expectations donors and taxpayers have <strong>of</strong> us<br />

to be good stewards <strong>of</strong> their contributions.<br />

The creation <strong>of</strong> the <strong>MS</strong> Community Advisory<br />

Council, which has brought together<br />

stakeholders from across the province, has<br />

been supported extensively by the Alberta<br />

continues...


Division Board’s three Committee Chairs and a Secretariat <strong>of</strong> senior<br />

staff across government relations, client services and communications.<br />

In the New Year, there are plans to mobilize up to 100 <strong>MS</strong><br />

Ambassadors from across the province to inform 83 MLAs<br />

and members <strong>of</strong> the new Provincial Health Super Board <strong>of</strong> the<br />

recommendations in the submission.<br />

The ability to mobilize more grassroots support builds tremendous<br />

capacity within the organization to advance social policy and change<br />

how <strong>MS</strong> care and support services are provided.<br />

Alberta fundraising results show strong growth<br />

2008-2009 revenue from donations and special fundraising projects<br />

increased by $292,775, or 6.3%, over 2008 as a result <strong>of</strong> the financial<br />

performance <strong>of</strong> the 12 Enerflex <strong>MS</strong> Walks and RONA <strong>MS</strong> Bike Tours<br />

throughout Alberta. (The exception was the Calgary Bike Tour).<br />

The golf tournaments did very well also, along with new sponsorship<br />

acquisition that currently exceeds $200,000. Bequest income<br />

Revenue was up 6.3% in 2008-2009, a testimony to the generous nature <strong>of</strong><br />

Albertans during the economic climate <strong>of</strong> the past year.<br />

surpassed expectations as well which reminds us <strong>of</strong> the importance <strong>of</strong><br />

promoting this income stream which is part <strong>of</strong> the Leadership Giving<br />

responsibilities <strong>of</strong> our two Directors. Major gift donations experienced<br />

the largest decline outside <strong>of</strong> investment income which is to be<br />

expected during this period <strong>of</strong> economic downturn.<br />

The efforts that pull all these threads together as described above<br />

comes from our communications and staff who work very hard to<br />

produce information & marketing materials, web & media presence,<br />

synergy between departments <strong>of</strong> the National organization and<br />

connections with clients, members, sponsors, donors, health providers<br />

and government. This is where our story<br />

is told and where the finishing touches<br />

to our success resides.<br />

Tremendous forward momentum<br />

In closing, let me say how happy I am<br />

to be part <strong>of</strong> the National <strong>MS</strong> team in<br />

supporting the efforts <strong>of</strong> so many wellserving<br />

volunteers and staff throughout<br />

the organization who do so much to help<br />

people living with <strong>MS</strong>. The tremendous<br />

support that we receive from so many<br />

people in Alberta is truly inspiring and<br />

makes it easy to get up for work in the<br />

morning. I feel very good about the<br />

bench strength <strong>of</strong> our staff who have<br />

given the current management their vote<br />

<strong>of</strong> confidence through the National staff<br />

satisfaction results which exceeded the<br />

National average in all areas. We have<br />

had tremendous momentum growing<br />

over the past number <strong>of</strong> years and a<br />

forward-thinking strategic plan that will<br />

lead us through these lean times.<br />

Changing <strong>of</strong> the guard on<br />

Alberta Division Board<br />

On another personal note, I wish to take<br />

this opportunity to publicly thank our<br />

outgoing Chair, Suzanne Deschamps,<br />

for her leadership <strong>of</strong> the organization<br />

and inspiration to so many <strong>of</strong> us on staff<br />

and participants at the RONA <strong>MS</strong> Bike<br />

Tour events that she never missed. You<br />

are the reason we do what we do. In her<br />

place, I welcome James Orr as the new<br />

incoming Chair <strong>of</strong> the Division Board<br />

whom I look forward to working with<br />

very much. And last but not least, I need<br />

to thank all our Division and Chapter<br />

Board members, staff and committee<br />

members for all that you do in building<br />

this momentum and success.


Liberation Treatment attracts<br />

international attention<br />

Alberta Division encourages Alberta Government to pursue<br />

options on CCSVI research<br />

Since the story about Dr. Paolo<br />

Zamboni’s Liberation Treatment<br />

first appeared on W-5 last<br />

November, we have heard from a lot <strong>of</strong><br />

people. Several people have told us we<br />

are moving too slow on pursuing this area<br />

<strong>of</strong> research. We have heard this loud and<br />

clear.<br />

The <strong>MS</strong> <strong>Society</strong><br />

responded by creating<br />

a new research<br />

competition to<br />

encourage Canadian<br />

researchers to contribute<br />

to the body <strong>of</strong> CCSVI<br />

knowledge.<br />

It is important to<br />

remember that while<br />

the early data shows<br />

promise, it is important<br />

to acknowledge that the<br />

concepts surrounding<br />

CCSVI and multiple<br />

sclerosis are still<br />

relatively new and<br />

requires replication<br />

and validation in much<br />

larger, well-designed<br />

scientific studies before<br />

they can be accepted as<br />

established.<br />

Studies funded by<br />

the <strong>MS</strong> <strong>Society</strong> should<br />

help to further develop<br />

the current research<br />

ideas <strong>of</strong> the association<br />

between CCSVI and<br />

<strong>MS</strong> and determine<br />

whether the potential treatment <strong>of</strong><br />

CCSVI warrants further investigation into<br />

potential implication in individuals with<br />

<strong>MS</strong>.<br />

Chronic cerebrospinal venous<br />

insufficiency (CCSVI) is a term used to<br />

describe this hypothetical situation in<br />

which the venous system is not able to<br />

efficiently remove blood from the central<br />

nervous system. It is stated that this is<br />

related to narrowing <strong>of</strong> small venous<br />

structures in the neck,<br />

chest and spine.<br />

The <strong>MS</strong><br />

<strong>Society</strong> in Alberta<br />

has been proactive in<br />

communicating with the<br />

Alberta Government,<br />

through our elected<br />

<strong>of</strong>ficials, on the<br />

importance <strong>of</strong> providing<br />

leadership and funding<br />

<strong>of</strong> CCSVI research.<br />

Since November we<br />

have had meetings with<br />

Ministers Ron Liepert,<br />

Lloyd Snelgrove and<br />

Doug Horner. Each one<br />

has expressed interest<br />

in reaching out to<br />

Alberta researchers and<br />

health institutions for<br />

further opinion on the<br />

promise this research<br />

holds and the role, if<br />

any, Alberta should<br />

play.<br />

As <strong>of</strong> <strong>Jan</strong>uary 10,<br />

2010 we have secured<br />

a commitment from<br />

the Hon. Doug Horner<br />

to assign Ministry staff<br />

to the CCSVI file. We will continue to<br />

advocate for research breakthroughs like<br />

CCSVI and for major steps forward in the<br />

support <strong>of</strong> people living with <strong>MS</strong> today.<br />

We will<br />

continue to<br />

advocate<br />

for research<br />

breakthroughs<br />

like CCSVI<br />

and for major<br />

steps forward<br />

in the support<br />

<strong>of</strong> people<br />

living with <strong>MS</strong><br />

today.<br />

CCSVI<br />

research grant<br />

timelines<br />

December 9, 2009<br />

Launch <strong>of</strong> Request for Research<br />

Operating Grants<br />

<strong>Jan</strong>uary 6, 2010<br />

Letter <strong>of</strong> Intent Due<br />

<strong>Jan</strong>uary 12, 2010<br />

Invitation to Submit Full<br />

Application<br />

February 9, 2010<br />

Full Applications Due<br />

June 14, 2010<br />

Announcement <strong>of</strong> Funding<br />

Decisions, Following Approval by<br />

the <strong>MS</strong> <strong>Society</strong>’s Board <strong>of</strong> Directors<br />

July 1, 2010<br />

Anticipated Start Date <strong>of</strong> Funding<br />

Up to 2 years<br />

Duration <strong>of</strong> Research Operating<br />

Grant<br />

Up to $100,000 per year<br />

Maximum Funding Amount Per<br />

Grant<br />

<strong>MS</strong> <strong>Connections</strong> Winter 2010 13


2009<br />

Volunteer <strong>of</strong> the Year Award – Joanne Robinson Award<br />

Robert Boychuk, Edmonton<br />

Robert is a very dedicated volunteer who shows up at the<br />

same times twice per week and in many respects fills the<br />

role <strong>of</strong> a part-time employee. One <strong>of</strong> Robert’s principal<br />

volunteer contributions has been his vast assistance with<br />

the development <strong>of</strong> <strong>MS</strong> <strong>Society</strong> information resources. It is<br />

this service that has been invaluable not only to clients, but<br />

also to Chapter and Division staff who, because <strong>of</strong> Robert’s<br />

contributions, are now more equipped to <strong>of</strong>fer support to<br />

those with <strong>MS</strong>. More specifically, some <strong>of</strong> Robert’s many<br />

contributions include assisting in the development <strong>of</strong> the<br />

Seize the<br />

Momentum<br />

Annual Awards Banquet<br />

Saturday, November 7, 2009 • Delta Calgary South<br />

Every year Alberta Division recognizes individuals and organizations who have made an<br />

outstanding contribution to the <strong>MS</strong> <strong>Society</strong> throughout the year. We are proud to recognize and<br />

celebrate the achievements <strong>of</strong> this elite group.<br />

Julie Kelndorfer, Director <strong>of</strong> Government and Community<br />

Relations and Scott Robson, Manager <strong>of</strong> Volunteer<br />

Resources present Robert (centre) with his award.<br />

14 <strong>MS</strong> <strong>Connections</strong> Winter 2010<br />

<strong>Multiple</strong> <strong>Sclerosis</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong><br />

Alberta Division<br />

Client Services Information Library, <strong>MS</strong> Info Wiki, Volunteer<br />

Administration Materials and Staff Information Technology<br />

Training Sessions.<br />

Development Volunteer Of The Year Award<br />

(Pat Stewart Award)<br />

Darrel Frisken, Lloydminster<br />

Over the past four years, Darrel Frisken has been the<br />

dedicated Chair <strong>of</strong> the Lloydminster Chapter Board <strong>of</strong><br />

Directors. During this time, he has made a pr<strong>of</strong>ound<br />

Suzanne Deschamp, Past Chair <strong>of</strong> the Alberta Division<br />

Board <strong>of</strong> Directors, presents Darrel Frisken with his award.


impact on the <strong>MS</strong> <strong>Society</strong> and its role in the Lloydminster<br />

community. Darrel initiated several development initiatives,<br />

including applying for the 2008 Safeway We Care Program<br />

which raised over $16,000 for the Chapter. He also started<br />

discussions with Leckie & Associates (a local accounting<br />

firm) regarding becoming the charity <strong>of</strong> choice for their<br />

annual Charity Golf Tournament. The Chapter was in fact<br />

chosen and received nearly $29,000. Darrel also initiated<br />

an application to the City <strong>of</strong> Lloydminster’s Family and<br />

Community Support Services, which resulted in over $15,000<br />

in new funding to the Lloydminster Chapter over the past two<br />

years.<br />

Special Service Award Of The Year<br />

Elizabethan Catering, Edmonton<br />

Elizabethan Catering has been an ongoing sponsor <strong>of</strong> the<br />

RONA <strong>MS</strong> Bike Tour – Leduc to Camrose for over 10 years.<br />

They provide the BBQ at the finish line <strong>of</strong> the bike tour,<br />

providing food for over 1,500 cyclists and upwards <strong>of</strong> 300<br />

volunteers. We are very grateful for the commitment and<br />

generosity that Elizabethan has shown to the <strong>MS</strong> <strong>Society</strong>.<br />

Each year, they provide the same quality service to our<br />

participants and work tirelessly to get the job done.<br />

Pr<strong>of</strong>essional Care Award<br />

Dr. Mary Lou Myles, Edmonton<br />

As an Edmonton community Neurologist, Dr Myles has<br />

been involved with many aspects <strong>of</strong> care and services for<br />

persons with <strong>MS</strong> for over a decade – locally, provincially,<br />

and nationally. Her commitment to persons with <strong>MS</strong>,<br />

their care and treatment, and to the <strong>MS</strong> <strong>Society</strong> has been<br />

exemplary. The Edmonton Chapter can always count on Dr.<br />

Myles to promote and support its work with persons with<br />

<strong>MS</strong> and their families. In particular, Dr Myles has been an<br />

instrumental part <strong>of</strong> the Edmonton Chapter’s development <strong>of</strong><br />

the <strong>MS</strong> ActiveNOW program – a health promotion program<br />

for persons with <strong>MS</strong>. Dr Myles continues to support the<br />

education <strong>of</strong> persons with <strong>MS</strong> and their families.<br />

Communications Award<br />

Priority Printing, Edmonton<br />

Priority Printing has been a partner <strong>of</strong> the <strong>MS</strong> <strong>Society</strong> for the<br />

past five years. Much more than a printer, Priority has been<br />

involved in helping us meet our goals year after year. From<br />

donating banners, which are an important awareness raising<br />

tool, to walking as a team in the St. Albert Enerflex <strong>MS</strong> Walk,<br />

Priority plays a large role in our success in Alberta. The<br />

Edmonton printing company has walked in the St. Albert walk<br />

since 2006 and has raised over $11,000. Their staff take great<br />

care to ensure our printing needs are met on time, on budget<br />

and to the highest standards.<br />

Board Chair’s Special Recognition Award<br />

Gem School<br />

Gem is a farming community <strong>of</strong> about 200 people which has<br />

a curling rink, community hall, fire hall, two churches, the<br />

school and no store. This school serves local students from<br />

grades one to six, with thirty students attending. The school<br />

is very proud <strong>of</strong> its students’ good citizenship and high level<br />

<strong>of</strong> academic achievement. Gem School has been participating<br />

in the <strong>MS</strong> Read-A-Thon for over 20 years and over the last<br />

seven years has raised close to $9,000 for the <strong>MS</strong> <strong>Society</strong>.<br />

This fall the school raised $1,378 with 29 <strong>of</strong> their 30 students<br />

participating.<br />

Suzanne Deschamp (second from right), Past Chair, presents<br />

representatives from Gem School with their award.<br />

Paul Scott Award<br />

Alison Hagan, Edmonton<br />

Alison’s journey with the <strong>MS</strong> <strong>Society</strong> started in the<br />

Central Alberta Chapter in May 1998 as the Development<br />

Coordinator. In 2000, Alison moved to Alberta Division as<br />

Suzanne Deschamp, Past Chair, presents Alison Hagan<br />

with her award.<br />

<strong>MS</strong> <strong>Connections</strong> Winter 2010 15


the Bike Tours Manager where she was in charge <strong>of</strong> the Leduc<br />

to Camrose and Hinton Tours. Alison became the Director <strong>of</strong><br />

Development in the fall <strong>of</strong> 2003 and has been in this role ever<br />

since. Alison’s many years <strong>of</strong> service with the <strong>Society</strong> ensure<br />

that she is able to provide a great sense <strong>of</strong> history around the<br />

events. However, she is always open to trying new things which<br />

has helped the Alberta Walk and Bike programs double their<br />

revenues since 2004. Alison was also a key factor in bringing<br />

Enerflex on as a Provincial Walk sponsor.<br />

Division Award <strong>of</strong> Merit, Non-Member<br />

Lloydminster Bobcats, Lloydminster<br />

The Lloydminster Bobcats Junior A Hockey Team became<br />

involved with the <strong>MS</strong> <strong>Society</strong> in the fall <strong>of</strong> 2007, when they<br />

participated in the Lloydminster Enerflex <strong>MS</strong> Walk. At the<br />

2008 Walk, team General Manager Jim Crosson publicly<br />

announced that the Bobcats wanted to do more in the fight<br />

against <strong>MS</strong>, and <strong>of</strong>fered up two special ‘<strong>MS</strong> Game Nights’<br />

during their 2008-2009 season to fundraise and promote <strong>MS</strong><br />

awareness. The Bobcats also formed a Walk team and raised<br />

nearly $4,000. On Walk day in 2009, the team came out in full<br />

force. Head Coach Tom Keca truly made the Walk a family affair,<br />

bringing his young children and wife, as well as his parents from<br />

out <strong>of</strong> town for the event, all <strong>of</strong> whom also fundraised.<br />

Opal Award<br />

Craig Anderson, Grimshaw<br />

In 1993, Craig’s wife Sandi <strong>of</strong> 18 years was diagnosed with<br />

progressive multiple sclerosis. Craig has been Sandi’s constant<br />

and <strong>of</strong>ten primary caregiver for the past 16 years. Once active in<br />

the community, at the local school, and a busy Girl Guide leader,<br />

Sandi’s progressive <strong>MS</strong> has meant she cannot do many <strong>of</strong> the<br />

things she used to do. Craig’s day begins as he rises at 4:30<br />

Suzanne Deschamp, Past Chair, presents Craig Anderson<br />

with his award.<br />

16 <strong>MS</strong> <strong>Connections</strong> Winter 2010<br />

am to get ready for work, then awakens Sandi at six. Craig<br />

returns home at six each evening, prepares dinner for the<br />

two <strong>of</strong> them, and after exercising and giving Sandi a bath,<br />

they relax over a game <strong>of</strong> cards or taking in some television<br />

before retiring to bed by 9:30 or 10:00 pm. Weekends<br />

are reserved for special events for the Andersons: visiting<br />

their children and grandchildren in Edmonton and Grande<br />

Prairie; attending hockey games in the winter; walking and<br />

gardening; and <strong>of</strong> course visiting friends in Grimshaw and<br />

Peace River.<br />

President’s Award – Alberta Division<br />

Suzanne Deschamps, Cold Lake<br />

Suzanne Deschamps was diagnosed with <strong>MS</strong> in November<br />

1992 after losing her eyesight in one eye. Suzanne did not<br />

waste any time getting involved with and supporting the <strong>MS</strong><br />

<strong>Society</strong> after her diagnosis. She first became involved as a<br />

member <strong>of</strong> the Lakeland Chapter; then became President<br />

<strong>of</strong> the Chapter in 1993, a position she still holds to this day.<br />

Suzanne is also Past Chair <strong>of</strong> the Alberta Division Board <strong>of</strong><br />

Directors and has been a member <strong>of</strong> the National Board <strong>of</strong><br />

Directors for the past two years. One <strong>of</strong> Suzanne’s greatest<br />

accomplishments was her work in helping to get four <strong>MS</strong><br />

drug therapies on the Alberta drug formulary. With other<br />

supporters around the province, Suzanne helped gather a<br />

petition with 31,000 names, which she presented to Alberta<br />

Health and Wellness Minister Halvar Jonson in the spring<br />

<strong>of</strong> 1998. In June <strong>of</strong> 1998 Suzanne received a phone call with<br />

the good news that <strong>MS</strong> drugs would be covered by Alberta<br />

Health.<br />

James Orr, Chair <strong>of</strong> the Alberta Division Board <strong>of</strong><br />

Directors, presents Suzanne Deschamps with her award.


Expanding our horizons<br />

Provincial Expansion Implementation Initiative 2007-2009<br />

Garry Wheeler PhD RPsych<br />

(Boundary Review Committee), Alberta Division<br />

Expansion Initiative Chair<br />

In September 2007 the <strong>MS</strong><br />

<strong>Society</strong>, Alberta Division, formed<br />

a committee to review Chapter<br />

boundaries throughout the province.<br />

The purpose was to ensure no one in<br />

Alberta with <strong>MS</strong> was left without access<br />

to services regardless <strong>of</strong> where they<br />

lived in the province. The committee also<br />

looked at whether there were potential<br />

fundraising opportunities in the province.<br />

No such review had been undertaken<br />

since 1981. In September 2008, after<br />

extensive consultation, a three-phase<br />

boundary expansion plan was approved.<br />

Phase I <strong>of</strong> the plan involved an<br />

immediate expansion <strong>of</strong> the Chapter<br />

boundaries <strong>of</strong> Lethbridge, Medicine<br />

Hat (Southeastern), Calgary and, most<br />

recently, Edmonton. The boundaries were<br />

expanded to align with the old Alberta<br />

health regions. In addition to expanding<br />

its boundary, Edmonton Chapter formally<br />

changed its name to the Edmonton<br />

and Capital Region Chapter. A second<br />

Phase I recommendation was to initiate<br />

discussions between neighbouring<br />

staffed and volunteer chapters to<br />

increase inter-chapter cooperation and<br />

to discuss the possibility <strong>of</strong> sharing client<br />

services staff with the volunteer chapters.<br />

Central Alberta (staffed) and Drumheller<br />

(volunteer) are already in discussions<br />

to undertake this type <strong>of</strong> arrangement<br />

in 2010. In the meantime, Lloydminster<br />

has expanded its boundary to take in the<br />

town <strong>of</strong> Vermillion to the west.<br />

Finally, a recommendation to take<br />

advantage <strong>of</strong> current fundraising efforts<br />

in St. Paul (Lakeland area) and Hinton<br />

in order to introduce a client services<br />

element to the community have already<br />

begun to bear fruit. In the spring <strong>of</strong> 2009<br />

a part-time Client Services Coordinator<br />

was hired in St. Paul and has made<br />

significant strides in providing supports<br />

to persons living with <strong>MS</strong> in the Lakeland<br />

Region. Recently, an advertisement<br />

to hire a part-time Client Services<br />

Coordinator was launched in the “Rocky<br />

View” region (Edson, Hinton, Jasper)<br />

after a successful meeting on November<br />

25 during which local commitment to<br />

form a ‘Rocky View’ regional advisory<br />

committee was established. We hope to<br />

have a client services staff member on<br />

the ground in Hinton to serve the ‘Rocky<br />

View’ (Eastern slopes) area by <strong>Jan</strong>uary<br />

2010. This in fact represents the first part<br />

<strong>of</strong> phase II <strong>of</strong> the newly named Provincial<br />

Expansion Implementation Initiative.<br />

As we move into Phase II <strong>of</strong> the<br />

ADEI, we shall focus on expanding<br />

services in the Fort McMurray region and<br />

This exhibit and art sale will showcase works from local<br />

artists as well as others who believe in Team Docktor’s<br />

cause <strong>of</strong> a world without <strong>MS</strong>. The show will include<br />

works in different media such as: painting, photography,<br />

printmaking, and jewellery design, among others.<br />

When: April 22 - 23, 2010<br />

Opening Night: April 22, 2010<br />

Art<br />

again taking advantage <strong>of</strong> the existing<br />

fundraising (Enerflex <strong>MS</strong> Walk) to raise<br />

awareness and provide the seed funding<br />

for this position. During the fall <strong>of</strong> 2010<br />

we will turn our focus to Camrose and<br />

begin the process <strong>of</strong> reviving volunteer<br />

support and creating a client services<br />

and fundraising presence in an area<br />

defined by three major centres, namely<br />

Westaskiwin, Camrose and Vegreville.<br />

Additionally, we will explore possibilities<br />

for expanding client services support to<br />

the Barrhead, Westlock and Whitecourt<br />

areas as a final element in our Aspen<br />

(old) health region expansion.<br />

Phase III shall be undertaken in 2011<br />

during which there will be a major focus<br />

on the northern regions <strong>of</strong> our province.<br />

We are making excellent progress in<br />

expanding our reach to Albertans with<br />

<strong>MS</strong> regardless <strong>of</strong> where they live in Alberta,<br />

and the prospect <strong>of</strong> a seamless client<br />

service provision is becoming a reality.<br />

<strong>MS</strong><br />

by Team Docktor<br />

2010 will see the birth <strong>of</strong> Art for<strong>MS</strong>, an art exhibit and fundraising event in support <strong>of</strong> the<br />

<strong>MS</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong>. This show will be hosted by DaDe ART & DESIGN LAB located in<br />

the area <strong>of</strong> Inglewood in Calgary.<br />

Where: DaDe ART & DESIGN LAB<br />

1327 - 9th Ave. SE<br />

Calgary, AB<br />

If you would like to donate<br />

your art, please contact Mali<br />

at mali@teamdocktor.com or<br />

403-890-6254<br />

<strong>MS</strong> <strong>Connections</strong> Winter 2010 17


A Lloydminster Family’s Fight with <strong>MS</strong> Sparks ‘Friendly’ Walk Rivalry<br />

Talk to any fundraiser and they’ll<br />

tell you the key to success is<br />

having more courage to ASK than<br />

fear <strong>of</strong> being rejected. That’s exactly<br />

what Gail Taylor did earlier this year<br />

when she was gearing her team up for<br />

the Lloydminster Enerflex <strong>MS</strong> Walk.<br />

She wrote a letter to the Saskatchewan<br />

Roughriders, telling them about her <strong>MS</strong><br />

story and asking if they’d be willing to<br />

help outfit her Walk team. That ask was<br />

all it took for Gail to receive a box <strong>of</strong> loot<br />

from the Riders and in April <strong>of</strong> 2009, Gail<br />

It didn’t mean<br />

anything to me<br />

that she was<br />

different than the<br />

other grandmas<br />

and couldn’t do<br />

the same things<br />

– she was still my<br />

grandma.<br />

and her Nerbas Familiy Team sported<br />

their Rider Pride at the Lloydminster<br />

Walk.<br />

Given Lloydminster’s status<br />

as a ‘Border City’, where you’re in<br />

Saskatchewan one minute and Alberta<br />

the next, it seemed only a matter <strong>of</strong> time<br />

before members <strong>of</strong> the ‘Eskimo Empire’<br />

took up the call to action. Enter Donna<br />

Schellenberg – long-time Lloydminster<br />

walker and Team Captain. “Last year we<br />

saw the Roughriders team and thought<br />

18 <strong>MS</strong> <strong>Connections</strong> Winter 2010<br />

Battle<br />

on the<br />

Border<br />

Gail Taylor & the Nerbas Family Team.<br />

perhaps they needed a little competition.<br />

There is a friendly rivalry here as we are<br />

a border city, and my husband is a huge<br />

fan <strong>of</strong> the Eskimos. We thought it would<br />

be great to carry that rivalry over to the<br />

Walk” says Donna. No sooner was ‘the<br />

ask’ made than another box <strong>of</strong> loot was<br />

in the mail, this time from the Green &<br />

Gold. Now that Donna and her team<br />

are decked out, they’re motivated to<br />

kick their fundraising into full gear. “The<br />

Eskimos were incredibly generous to<br />

our team so we hope to do them proud<br />

by raising double what we did last year<br />

[$3,376 in 2009]. We’re going to be as<br />

outrageous as we can to outdo those<br />

Riders!”<br />

But while the rivalry is all in good fun,<br />

the story behind Donna’s involvement is<br />

deeply personal.<br />

“Our motivation is our family<br />

experience,” says Donna. “My first<br />

memories <strong>of</strong> my grandma are her with<br />

her crutches. It didn’t mean anything<br />

to me but they were always there. It<br />

didn’t mean anything to me that she<br />

was different than the other grandmas<br />

and couldn’t do the same things – she<br />

was still my grandma. She taught me<br />

cartwheels on our front lawn and even<br />

though she couldn’t come to gymnastics<br />

competitions she still encouraged me<br />

and loved to watch me practice. It<br />

wasn’t until years later I knew she<br />

had <strong>MS</strong>.” Donna’s experiences with<br />

her grandma would not be her only<br />

encounter with the disease. “My dad<br />

was diagnosed with Chronic Progressive<br />

<strong>MS</strong> when he was 45; his condition<br />

deteriorated very rapidly. By age 50<br />

he had lost his license and was using a<br />

special computer with voice recognition<br />

s<strong>of</strong>tware at work as he had already lost<br />

most <strong>of</strong> the use <strong>of</strong> his legs and arms.”


Donna says her father never had a<br />

chance to play with his grandkids or<br />

make trips to visit them, as his condition<br />

required almost 24-hour care. Four years<br />

ago, pneumonia took his life. For Donna,<br />

who had watched her father battle the<br />

disease, the loss brought with it both<br />

pain and pride. “My dad said <strong>MS</strong> stole<br />

his dignity. It stole his independence, his<br />

ability to hug his kids and grandkids and<br />

do almost all the day-to-day activities we<br />

take for granted. Not once, however, did<br />

my dad ever give up! He was a fighter<br />

and through all the indignities held his<br />

head high and was proud <strong>of</strong> the person<br />

he was – he just wished other people<br />

would see past the disease to know that<br />

too. When your voice goes it’s hard to<br />

be heard.”<br />

Now, Donna has taken it upon<br />

herself to be a voice for the cause. For<br />

a decade, she has been a dedicated<br />

fundraiser for the Lloydminster Enerflex<br />

<strong>MS</strong> Walk. “Until my dad passed away<br />

I walked for him and all those who<br />

have lived through what I saw him go<br />

through. Now I Walk for all the others<br />

I have met over the years to help find a<br />

cure.” With two instances <strong>of</strong> <strong>MS</strong> in the<br />

family already, Donna says she can’t<br />

help but worry about the possibility <strong>of</strong><br />

the disease touching her, too. “I guess I<br />

also Walk for me as I am next in line in<br />

my family. I never want my kids to have<br />

Donna Schellenberg with her Eskimos loot.<br />

the same experience I<br />

did watching a parent<br />

suffer through this<br />

disease and I don’t<br />

want them to suffer if it<br />

is passed onto them.”<br />

In 2009, Donna<br />

stepped up her<br />

commitment even<br />

more, becoming<br />

a sponsor for the<br />

Lloydminster Walk<br />

through her company<br />

‘To the Core.’ “I got<br />

involved as a corporate<br />

sponsor because I<br />

thought it would be a<br />

way I could contribute<br />

more to help the <strong>MS</strong><br />

<strong>Society</strong>. Running a<br />

Pilates studio I see<br />

many people every<br />

week. I think the more people know you<br />

are involved, the more likely they are to<br />

become involved too. I try to foster a<br />

spirit <strong>of</strong> giving at the studio so I’m hoping<br />

that it will encourage other people to<br />

become volunteers or take part in the<br />

Walk or join our team.”<br />

Donna’s ‘To the Core’ team is a mix<br />

<strong>of</strong> clients from her Pilates studio and her<br />

own young family. For the 2009 Walk,<br />

they held numerous team fundraising<br />

events, including a garage sale, where her<br />

Donna with her son Blaine, and their<br />

‘To The Core’ Walk Team.<br />

12-year-old son manned his own bake<br />

sale – which sold out on the first day!<br />

They’re already working on new projects<br />

for 2010, and say doing it as a team is the<br />

way to go. “As a team we just have more<br />

fun. We get our outfits together, have<br />

our pictures taken and Walk together.<br />

We also raise more money together,<br />

challenge each other to get more pledges<br />

when we get lazy, and push each other<br />

to keep walking when it snows on<br />

Walk day...almost never happens here<br />

in Lloydminster though...I wish!” For<br />

Donna, having a team is also a way <strong>of</strong><br />

bringing the family together. “My Mom<br />

is one <strong>of</strong> my biggest supporters. She has<br />

Walked, fundraised and supported me<br />

throughout all <strong>of</strong> my experiences with the<br />

<strong>MS</strong> <strong>Society</strong>. This is truly a family passion.<br />

I think this year my youngest, Benjamin,<br />

4, and Samantha, 6, may walk with us<br />

too. No harm in starting the trend young!<br />

They’ll be irresistible as fundraisers!”<br />

Every step that Donna and her<br />

family take on their journey against <strong>MS</strong><br />

is fuelled by inspiration from a man who<br />

lives on through their spirit. “My dad<br />

gave as much as he could to the <strong>MS</strong><br />

<strong>Society</strong> every year and even took part in<br />

his wheelchair until he couldn’t drive it<br />

anymore. I like to think I am continuing<br />

his legacy and allowing my children to do<br />

the same,” says Donna.<br />

<strong>MS</strong> <strong>Connections</strong> Winter 2010 19


Paint the town<br />

RED!<br />

Downtown Edmonton that is<br />

By Mona Pattison, Development Manager, Enerflex <strong>MS</strong> Walk<br />

am pleased to <strong>of</strong>ficially announce that<br />

I the Edmonton Enerflex <strong>MS</strong> Walk will<br />

be moving downtown beginning in 2010.<br />

We have enjoyed 19 years at Rundle<br />

Park and have seen great change and<br />

growth in that time. Edmonton had the<br />

distinction <strong>of</strong> being one <strong>of</strong> the first <strong>MS</strong><br />

Walks when it made its debut in 1991.<br />

This inaugural event boasted 1200<br />

walkers who raised over $135,000 – a<br />

great accomplishment for the first <strong>MS</strong><br />

Walk and an indication that the walk was<br />

here to stay!<br />

To celebrate the 20th year <strong>of</strong> the<br />

<strong>MS</strong> Walk in Edmonton we are moving<br />

to Churchill Square in the heart <strong>of</strong><br />

downtown Edmonton. The square will<br />

host all event activities including the<br />

start and finish line, pledge drop <strong>of</strong>f,<br />

team tents, food and entertainment. This<br />

central location will put us in the public<br />

eye to explain our cause, share our story<br />

and show our dedication to ending <strong>MS</strong>.<br />

We know how important the route is<br />

20 <strong>MS</strong> <strong>Connections</strong> Winter 2010<br />

to our walkers and we have worked very<br />

hard to find the perfect combination <strong>of</strong><br />

visibility to the public and a scenic route<br />

that is beautiful to experience. The 2010<br />

route will include highlights such as the<br />

Legislature grounds, River Valley Road<br />

and Government House Park. There will<br />

be two route lengths, including one that<br />

is fully accessible.<br />

Getting to the walk will be a breeze<br />

with numerous parking and public<br />

transportation options available. Wear<br />

your participant or volunteer shirt on any<br />

ETS bus or LRT on event day and you’ll<br />

ride for free! This is a stress-free way to<br />

get downtown and a great opportunity to<br />

wear your shirt proudly.<br />

Join us on Sunday May 16, 2010 as the<br />

Edmonton Enerflex <strong>MS</strong> Walk takes over<br />

downtown to prove that we will be seen,<br />

we will be heard, and we will end <strong>MS</strong>.<br />

For the latest information and to<br />

register for the event please visit www.<br />

mswalks.ca<br />

<strong>MS</strong> Support Groups in Alberta<br />

Battle River /Wainwright — call Teresa at 780-755-2226.<br />

Boyle Area — call Deloris at 780-689-4300.<br />

Brooks — call the Southeastern Chapter <strong>of</strong>fice at 403-529-6797. Ask for<br />

Shivonne.<br />

Calgary — call (403) 250-7090 for further information.<br />

Cold Lake/Lakeland — call Suzanne at 780-639-4145.<br />

Drumheller — call Karen at 403-820-7863.<br />

Edmonton — call 780-471-3034 for further information.<br />

Elk Point — call 780-724-2430 for further information.<br />

Fairview — call 780-835-4868 for further information.<br />

Hinton — call Aileen at 1-800-268-7582 for further information.<br />

Lethbridge — call (403) 328-7002 for further information.<br />

Lloydminster — call (780) 871-0513 for further information.<br />

Medicine Hat — call (403) 529-6797 for further information.<br />

Pincher Creek /Crowsnest — call 403-627-2106 for further information.<br />

Red Deer — call (403) 346-0290 for further information.<br />

South Peace/Grande Prairie — call 780-532-3204 for further information.<br />

St. Paul — call Denise at 780-645-3441 ext 226 for further information.<br />

T<strong>of</strong>ield — <strong>MS</strong> Support Group last Wednesday <strong>of</strong> the month.<br />

7 pm to 8:30 pm. T<strong>of</strong>ield Health Unit.<br />

Vegreville — call 780-632-2848 for further information.<br />

Yellowknife — call Shawn at 867-445-4372.


Lloydminster Chapter takes home<br />

‘Non-Pr<strong>of</strong>it <strong>of</strong> the Year’ Award<br />

The Lloydminster Chapter <strong>of</strong><br />

the <strong>MS</strong> <strong>Society</strong> received top<br />

honours from the local business<br />

community. On October 21, 2009, the<br />

Chapter captured the award for ‘Non-<br />

Pr<strong>of</strong>it <strong>of</strong> the Year’ at the Business Week<br />

Awards Gala, hosted by the Lloydminster<br />

Chamber <strong>of</strong> Commerce.<br />

The event featured a ‘coming<br />

together’ <strong>of</strong> the city’s most accomplished<br />

and notable businesspeople. Premier<br />

Ed Stelmach and MLA Lloyd Snelgrove<br />

were both in attendance for a portion<br />

<strong>of</strong> the program, bringing greetings and<br />

congratulating the award nominees<br />

for their excellence in serving the<br />

community.<br />

The Lloydminster Chapter was<br />

in esteemed company, with the Non-<br />

Pr<strong>of</strong>it category featuring some <strong>of</strong><br />

Lloydminster’s most prominent leaders<br />

in the sector. Nominations for the award<br />

were submitted by members <strong>of</strong> the local<br />

community. The nominated organization<br />

is then asked to complete a ‘business<br />

survey’, which is reviewed by an<br />

independent judging panel with whom<br />

the final decision rests. Judges take<br />

into account factors such as volunteer<br />

hours, significant contributions to the<br />

community in terms <strong>of</strong> economic impact,<br />

lasting legacy, and local, provincial and<br />

national exposure.<br />

Darrel Frisken, Past Chair <strong>of</strong> the<br />

Lloydminster Chapter Board <strong>of</strong> Directors,<br />

and Johanna Green, Executive Director,<br />

accepted the award on behalf <strong>of</strong> the<br />

Chapter, and thanked the community<br />

and all <strong>of</strong> the <strong>MS</strong> <strong>Society</strong>’s dedicated<br />

<strong>MS</strong> <strong>Society</strong> – Alberta Division has a<br />

Facebook page and a Twitter account!<br />

Become a fan on<br />

Facebook (www.facebook.com)<br />

or follow us on<br />

Twitter (www.twitter.com)<br />

and stay up to date<br />

Photo courtesy Don Whiting Photography<br />

Past Chapter Chair Darrel Frisken (left) and Executive Director, Johanna Green,<br />

accept the Non-Pr<strong>of</strong>it <strong>of</strong> the Year Award on behalf <strong>of</strong> the Lloydminster Chapter <strong>of</strong><br />

the <strong>MS</strong> <strong>Society</strong>, from Glen Fagnan <strong>of</strong> Midwest Communications, who sponsored<br />

the award.<br />

volunteers for their tremendous support.<br />

A number <strong>of</strong> key Chapter volunteers<br />

were also in attendance to celebrate the<br />

success and their instrumental role in<br />

achieving it.<br />

“Given the calibre <strong>of</strong> the other<br />

candidates in our category, we didn’t<br />

come into the evening expecting a win<br />

– we were truly honoured just to have<br />

been nominated,” said Green. “When<br />

they announced our name, we were quite<br />

overwhelmed. This award belongs to our<br />

vast army <strong>of</strong> volunteers who have taken<br />

up the fight to end <strong>MS</strong> and given wings<br />

Join us on<br />

and<br />

to our Chapter. It is their courage and<br />

ceaseless dedication, coupled with the<br />

tremendous support <strong>of</strong> the Lloydminster<br />

community, which has made this<br />

achievement possible.”<br />

The Lloydminster Chamber <strong>of</strong><br />

Commerce hosts the Business Week<br />

Awards Gala annually. Other categories<br />

include Business <strong>of</strong> the Year, Lifetime<br />

Achievement, Customer Service and City<br />

Ambassador, among many others.<br />

The Lloydminster Chapter also<br />

received a nomination for Non-Pr<strong>of</strong>it <strong>of</strong><br />

the Year in 2007.<br />

Facebook: Go to www.facebook.com and sign<br />

up as a member. Once you have a Facebook<br />

account, search “<strong>MS</strong> <strong>Society</strong> – Alberta Division”<br />

and become a fan.<br />

Twitter: Go to www.twitter.com and sign up<br />

as a member. Once you have a twitter account,<br />

search “<strong>MS</strong>_<strong>Society</strong>_AB” and follow us!<br />

<strong>MS</strong> <strong>Connections</strong> Winter 2010 21


The Power <strong>of</strong> Water<br />

Swim instructor develops water aerobics program for people with <strong>MS</strong><br />

M<br />

any people<br />

with <strong>MS</strong><br />

are unable to<br />

exercise in a<br />

traditional exercise<br />

environment.<br />

Swim instructor Sharon Charters has<br />

done something about that. She has<br />

customized an Aqualite Water Aerobics<br />

class specifically for people<br />

with <strong>MS</strong>. The Lloydminster<br />

<strong>MS</strong> Chapter began <strong>of</strong>fering<br />

the class to its members<br />

last spring as part <strong>of</strong> its<br />

<strong>MS</strong> ActiveNOW portfolio,<br />

and it’s been a hit ever<br />

since. Participants can do<br />

things in the pool that they<br />

couldn’t imagine doing on<br />

land because the water<br />

provides a medium that<br />

is both buoyant and lowimpact.<br />

“No wheelchairs, no<br />

walkers, no canes – just<br />

free movement,” says<br />

Charters. “Water aerobics<br />

is an all-round form <strong>of</strong><br />

exercise which can be<br />

adapted to each person,<br />

taking into consideration<br />

that person’s abilities. It<br />

can utilize all the muscle<br />

groups, it’s easy on the<br />

joints and it’s a total<br />

mind, body and spirit<br />

workout. And, it keeps<br />

the body cool!” A loyal<br />

group <strong>of</strong> participants eagerly anticipates<br />

Sharon’s weekly 45-minute class at the<br />

Lloydminster Leisure Centre.<br />

Sharon has exceeded all<br />

expectations as an instructor, having<br />

22 <strong>MS</strong> <strong>Connections</strong> Winter 2010<br />

taken the initiative to soak up as much<br />

information as possible about multiple<br />

sclerosis. Last October she attended<br />

the <strong>MS</strong> <strong>Connections</strong> Conference in<br />

Edmonton, where she again furthered<br />

her <strong>MS</strong> education. She’s also become<br />

an advocate for the benefits <strong>of</strong> exercise<br />

for people with <strong>MS</strong>, and has shared<br />

her knowledge with other health care<br />

Sharon Charters, seen here teaching her class, has taken up the<br />

initiative to learn as much about multiple sclerosis as she can and<br />

integrate it into her class.<br />

providers. But Sharon says that some<br />

<strong>of</strong> the most valuable lessons have come<br />

from those living with the disease.<br />

“Teaching the class has taught me<br />

patience, courage and a whole lot more<br />

about <strong>MS</strong>. I have learned that people<br />

with <strong>MS</strong> are awesomely strong; I have<br />

learned <strong>MS</strong> affects people in different<br />

ways; I have learned that even when<br />

you are diagnosed with <strong>MS</strong>, life goes on<br />

and you take each day at a time. And<br />

my ladies have taught me to SMILE no<br />

matter what.”<br />

Diagnosed with arthritis at age 13,<br />

Charters knows a thing or two about<br />

overcoming obstacles.<br />

After being told she’d<br />

be in a wheelchair by<br />

the age <strong>of</strong> 25, she took it<br />

upon herself to find every<br />

means possible to prevent<br />

that from becoming her<br />

future. Her search led her<br />

to the pool, where she<br />

quickly discovered the<br />

benefits <strong>of</strong> working out in<br />

the water. Staying active<br />

allowed Sharon to stave<br />

<strong>of</strong>f the most severe effects<br />

<strong>of</strong> arthritis. Today, she is a<br />

remarkably active ‘senior’,<br />

who has competed in<br />

several Senior Games as<br />

well as the World Masters<br />

Games. Humbly, she<br />

remarks “there are a few<br />

medals in the cupboard,<br />

and this summer I swam<br />

the Okanogan Lake - a<br />

long-time dream <strong>of</strong> mine.”<br />

What better person to<br />

inspire confidence in a<br />

group <strong>of</strong> people living<br />

with <strong>MS</strong>. Through her<br />

classes each week, and through her<br />

own example, Sharon is proving that<br />

“limitations” are only limiting if we<br />

allow them to be, and that obstacles are<br />

merely opportunities to seek out creative<br />

solutions.


The <strong>MS</strong> Community Advisory Council<br />

What’s it all about?<br />

The <strong>MS</strong> Community Advisory Council<br />

evolved from the <strong>MS</strong> Stakeholders Forum<br />

in October 2008 and works to address<br />

the five priorities listed below. The<br />

Council consists <strong>of</strong> 16 members and/or<br />

clients <strong>of</strong> the <strong>MS</strong> <strong>Society</strong> as well as the<br />

following 13 organizations:<br />

• Accessible Housing <strong>Society</strong><br />

• Alberta Committee <strong>of</strong> Citizens with<br />

Disabilities<br />

• Alberta Continuing Care Association<br />

• Alberta Home Care and Support<br />

Association<br />

• Alberta Senior Citizens’ Housing<br />

Association<br />

• Canadian Paraplegic Association<br />

• Case Managers from Health Services<br />

• Centre for Social Entrepreneurship<br />

School <strong>of</strong> Business<br />

• EmployAbilities<br />

• <strong>MS</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong>, Alberta<br />

Division<br />

• Steadward Centre<br />

• University <strong>of</strong> Alberta Hospital<br />

• University <strong>of</strong> Alberta, Faculty <strong>of</strong><br />

Nursing<br />

Do you want to<br />

be a face <strong>of</strong> <strong>MS</strong>?<br />

Submit your picture, name, age, and<br />

year you were diagnosed to angie.<br />

wight@mssociety.ca.<br />

Faces <strong>of</strong> <strong>MS</strong><br />

Your name<br />

Diagnosed with <strong>MS</strong> in at age < ><br />

The Council has created a<br />

submission to the Alberta Government<br />

entitled Moving Forward Together. The<br />

recommendation to Government within<br />

the submission is the creation <strong>of</strong> a<br />

Provincial <strong>MS</strong> Working Group. We need<br />

the Government’s help to bring about an<br />

enhanced care and support system for<br />

The<br />

recommendation<br />

to Government...is<br />

the creation <strong>of</strong><br />

a Provincial<br />

<strong>MS</strong> Working Group.<br />

Albertans with <strong>MS</strong>. We are requesting<br />

that the Minister <strong>of</strong> Health and Wellness<br />

create a Provincial <strong>MS</strong> Working Group.<br />

This group would involve departmental<br />

staff, staff <strong>of</strong> other relevant ministries,<br />

the <strong>MS</strong> <strong>Society</strong>, the <strong>MS</strong> community and<br />

others who the minister believes could<br />

contribute.<br />

Five Priorities<br />

With these principles in mind, we<br />

propose the Working Group address five<br />

priority areas:<br />

A. A Provincial Approach: Create a<br />

framework <strong>of</strong> collaboration involving<br />

government, the health care system and<br />

the <strong>MS</strong> community throughout Alberta.<br />

B. Rural Access: Develop strategies for<br />

improving access to services throughout<br />

Alberta, with emphasis upon rural<br />

Alberta.<br />

C. Creation <strong>of</strong> a Multidisciplinary<br />

Integrated Care System: An integrated<br />

system works best and a strategy needs<br />

to be developed to put one in place that<br />

includes all services and community<br />

supports that affect persons with <strong>MS</strong>.<br />

D. Appropriate Housing: <strong>MS</strong> patients<br />

have variant housing needs particular to<br />

their disease and strategies need to be<br />

developed to resolve those needs within<br />

the community and in the public housing<br />

framework.<br />

E. System Navigation: The health<br />

care system is complex and an <strong>MS</strong><br />

information support system needs to<br />

be developed to assist people with the<br />

information they need.<br />

For more information on the <strong>MS</strong><br />

Community Advisory Council please<br />

contact Julie Kelndorfer, Director,<br />

Government and Community Relations,<br />

at Julie.kelndorfer@mssociety.ca.<br />

Do you have<br />

your Husky gas<br />

card?<br />

Proceeds support the <strong>MS</strong><br />

<strong>Society</strong><br />

The Husky Community Rebate<br />

Program is an easy way to raise<br />

funds for the <strong>MS</strong> <strong>Society</strong> by<br />

purchasing gas! Husky sends a rebate to<br />

the <strong>MS</strong> <strong>Society</strong> <strong>of</strong> 2% <strong>of</strong> the purchases<br />

cardholders make at Husky or Mohawk<br />

stations or Husky House Restaurants.<br />

In one quarter over $23,000 in gas was<br />

purchased and we’ve received nearly<br />

$500!<br />

Call now to get your Husky<br />

Community Rebate Card!<br />

Contact Jill Opalka at jill.opalka@<br />

mssociety.ca or 780-463-1190.<br />

<strong>MS</strong> <strong>Connections</strong> Winter 2010 23


Leading By Example<br />

Classy event has raised $150,000<br />

to support people with <strong>MS</strong><br />

Cheryl Rose has been dedicated<br />

to making a difference for people<br />

with multiple sclerosis since<br />

her sister, Barbara, was diagnosed eight<br />

years ago. Barbara created a team in the<br />

Edmonton Enerflex <strong>MS</strong> Walk, the Rosebuddies,<br />

in 2003 in which Cheryl and<br />

many family members participate each<br />

year. The team has raised over $17,500<br />

to date!<br />

When Cheryl first started working at<br />

the Hilton Garden Inn – West Edmonton<br />

in 2004 as their Director <strong>of</strong> Sales, she<br />

saw the job as an opportunity to start an<br />

<strong>MS</strong> fundraiser <strong>of</strong> her own. After a few<br />

meetings with the <strong>MS</strong> <strong>Society</strong>, she was<br />

able to envision the elegant event that<br />

ultimately became the <strong>MS</strong> Wine Gala<br />

and Auction. The first one was held in the<br />

fall <strong>of</strong> 2006.<br />

This black-tie affair allows guests<br />

to indulge in a delectable five-course<br />

meal that is paired with different wines.<br />

Each wine and food course is guided<br />

by a sommelier and guests have the<br />

opportunity to ask questions and learn<br />

about the food and wine pairings.<br />

First-class entertainment wraps up<br />

the evening, following an exciting live<br />

and silent auction. Three galas have<br />

STAY INFORMED!<br />

The <strong>MS</strong> <strong>Society</strong> is committed<br />

to reaching out to all Albertans<br />

with <strong>MS</strong>. If you know someone<br />

who would like to receive<br />

a complimentary copy <strong>of</strong> <strong>MS</strong><br />

<strong>Connections</strong>, please call us at<br />

1-800-268-7582.<br />

Publications Mail Agreement 40064145<br />

Return undeliverable items to:<br />

<strong>MS</strong> <strong>Society</strong> <strong>of</strong> <strong>Canada</strong> Alberta Division<br />

#150, 9405 - 50 St, Edmonton T6B 2T4<br />

24 <strong>MS</strong> <strong>Connections</strong> Winter 2010<br />

been held so far, raising an astonishing<br />

$150,000! “My family has been greatly<br />

affected by this disease,” said Cheryl. “I<br />

know other families have so much to go<br />

through when <strong>MS</strong> enters their lives. This<br />

event gives us an opportunity to come<br />

together and do something meaningful.”<br />

The next <strong>MS</strong> Wine Gala and<br />

Auction is scheduled for October 23,<br />

2010 at the new Courtyard by Marriott<br />

Edmonton West opening this summer<br />

in Edmonton’s west end. If you are<br />

Imagine a future without <strong>Multiple</strong> <strong>Sclerosis</strong><br />

<strong>Jan</strong> Petrar knows one day this will be a reality and she’s<br />

doing something about it today.<br />

Southern Alberta<br />

George Jacob<br />

Ph: (403) 250-7090<br />

Email: george.jacob@mssociety.ca<br />

Web: www.<strong>MS</strong>legacy.ca<br />

<strong>Jan</strong> made a commitment in her will to support the <strong>MS</strong> <strong>Society</strong>’s<br />

internationally respected research program. “Research gave<br />

me my life back. It also gave my son and daughter their mother<br />

back.”<br />

She knows what it’s like to suffer through neurological pain, to<br />

deal with depression and fatigue. And she knows the impact<br />

this disease has on families and communities.<br />

“When I was diagnosed with <strong>MS</strong>, there were very few<br />

treatment options available, and little hope. The development<br />

<strong>of</strong> disease modifying therapies ultimately changed the course<br />

<strong>Jan</strong> Petrar and her children<br />

<strong>of</strong> this disease for me, my family, and so many others.”<br />

You too can create a legacy <strong>of</strong> hope for future generations! Contact us to find out how<br />

Northern Alberta<br />

Mark Mahl<br />

Ph: (780) 463-1190<br />

Email: mark.mahl@mssociety.ca<br />

Web: www.<strong>MS</strong>legacy.ca<br />

Cheryl Rose. Taking advantage<br />

<strong>of</strong> opportunities to give<br />

back “and do something<br />

meaningful.”<br />

interested in attending, please contact<br />

Graham Metzger at graham.metzger@<br />

mssociety.ca or call 780-440-8749.

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