Winter 2012/2013 - Multiple Sclerosis Society of Canada

A newsletter connecting Albertans who want to end MS
www.mssociety.ca/alberta
Connections
WINTER 2012/2013
TICKETS ONLY 3 FoR $20 or $10 eACH
oRDeR yoUR TiCKeTs now!
mssociety.ca/alberta or call 1-800-268-7582
“MS Society Alberta”
“MS Society Alberta ccsvi”
Do you Have your Ticket yet?
Grande Prize Draw is December 17, 2012
License #327905 • Maximum number of
tickets sold: 37,000. Visit mssociety.ca/alberta
to see the raffl e rules and to purchase tickets.
The 2012 Audi MS Car Raffl e supports MS research
Grande Prize: Brand new 2012 AUDi A3 2.0T - Valued at more than $40,500
Pssst!
Tell your
friends about
it, too!

MS Connections is published quarterly by the
MS Society of Canada, Alberta & Northwest
Territories Division. It is intended to provide
news and information for Albertans with
MS, their families, caregivers, medical
professionals and other stakeholders. The
information and opinions contained in
this newsletter are obtained from sources
believed to be reliable, but their accuracy
cannot be guaranteed. We value your
comments, feedback and reprint requests—
please email them to info.alberta@mssociety.
ca or call us at the numbers listed below.
MS Society of Canada
Alberta & Northwest Territories Division
Managing Editor, Darrel Gregory
darrel.gregory@mssociety.ca
Editor, Angie Mah
angie.mah@mssociety.ca
2012
Board of Directors
Chair: Carey Mogdan
1st Vice Chair: Kevin O’Neil
2nd Vice Chair: Phil Clarke
Treasurer: Gayelene Bonenfant
Secretary: Jessica Williams
Past Chair: James Orr
MEMBERS-AT-LARGE
Hazel Flewwelling
Melanee Framp
Wayne Jacques
Jason Kaye
Doreen Saunderson
Judy Gordon
Gail Taylor
Bob Macklon
Dr. Chris Power
Our Mission
To be a leader in finding a
cure for multiple sclerosis and
enabling people affected by MS
to enhance their quality of life.
Contact Us
#150, 9405 - 50 Street
Edmonton, Alberta T6B 2T4
Phone: (780) 463-1190
Toll-free: 1-800-268-7582
Fax: (780) 479-1001
Email: info.alberta@mssociety.ca
www.mssociety.ca/alberta
2 MS Connections Winter 2012/2013
A Time of
Organizational Renewal
For the past year, the MS Society of
Canada has undertaken a comprehensive
internal review of historic proportions to
examine every facet of the organization to find
new & better ways of fulfilling our mission: To
be a leader in finding a cure for MS and enabling
people affected by multiple sclerosis to enhance
their quality of life. The review was led by a
National Task Force appointed by the National
Board of Directors.
Hundreds of individuals and organizations
across Canada - including people living with MS, volunteers, ambassadors, staff
and health professionals - provided valuable input to the consultation process. We
sincerely thank you for your time and commitment to the mission of the MS Society.
I was pleased to serve on this Task Force and provide a voice from Alberta, along
with Ann Stewart, Executive Director of the Lethbridge & District Chapter, and Carey
Mogdan, Alberta Division Board Chair. I am pleased to report that the National
Board approved the Task Force’s 38 recommendations as presented, which you can
review at mssociety.ca. We will continue to listen to and collaborate with impacted
stakeholders as we implement the approved recommendations.
As you review these recommendations, you will see that they are organized into
four categories:
Financial: Enhance revenues, reduce costs related to infrastructure, reduce the cost
of fundraising, and spend in ways that enhance our ability to deliver on our mission.
Organizational alignment: Increase alignment and organizational effectiveness to
reduce the duplication of effort and enhance cohesiveness and decision making.
Client Services: Build on our existing client programs by enhancing access, quality,
and consistency and promoting excellence and innovation.
Research: Examine research avenues of greatest potential that will advance progress
towards treatments that provide greater quality of life today, and ultimately the
cause of and a cure for MS.
I believe the recommendations provide the right balance and that clients,
members, volunteers and other stakeholders will see many positive changes in the
coming years. Of all the recommendations that were approved by the National Board,
I think the ones that have the potential for the greatest impact are those that focus
on organizational re-alignment. This category of the renewal process will provide
tremendous opportunities to re-engineer how we deploy our volunteer and staff
resources to increase our effectiveness. For me personally, organizational renewal
couldn’t have come at a better time because the promise it offers is what convinced
me to spend the last chapter of my working career at the Society.
Neil Pierce
President
Alberta & Northwest Territories Division

Listening to People
Affected by MS
As part of a national organizational renewal process, the MS Society launches a
new initiative to reach out and listen to peope affected by MS
The MS Society of Canada wants
to hear from you so that we
can continue to improve our
programs, services and advocacy work.
Share your voice and insights through
the Listening initiative, which has the
single purpose of hearing from Canadians
affected by MS about their quality of life
priorities, needs, and barriers.
How can I have my voice heard?
The anonymous nation-wide survey is
open to:
~ those living with a diagnosis of MS
~ those waiting for a diagnosis with
respect to MS
~ close friends or family members of
people with MS
~ caregivers of people with MS
What kinds of questions will I answer?
We want to hear directly from you about
what quality of life really means in your
day-to-day life. What are your priorities
and needs when it comes to living well
with MS? What are the barriers that
prevent you from living a full life? What
supports are most helpful?
mslistening.ca
When and how will the survey be
available?
The survey will be available in November
2012 online (through mslistening.ca) and
in paper format, by calling 1-800-268-
7582.
If you request a paper copy, you will
have the option of sharing your responses
over the phone with someone who
Peer Link
The MS Society – Alberta & NWT Division is expanding its Peer Link
service to include all of Alberta. Volunteers Alvina and Jeannine are
ready to respond to any questions you have about your MS diagnosis, where
you can find services, and how to help your family adjust to the challenges
you face. Persons living with MS, families, health professionals and staff
are welcome to call or e-mail. You will receive a call or e-mail back within a
reasonable timeframe of about two days to a week.
Alvina lives with MS and has provided support at the Division office for
many years. Jeannine has worked with the MS Clinic as the Nurse Coordinator
and at the Edmonton Chapter on their Client Services team.
can transcribe them for you via
1-866-922-6065 ext. 3211.
Will the results of this initiative be
shared?
Yes. In 2013, you can look forward to hearing
what Canadians affected by MS have
said about their quality of life needs, priorities
and barriers as well as how the MS Society
plans to make a difference. Stay tuned.
Just a call or email away
Alvina Hughes
780-475-8255
alvina.hughes@mssociety.ca
Jeannine Christopherson
jeannine.christopherson@mssociety.ca
MS Connections Winter 2012/2013 3

The Gift of Inspiration
A Tribute to Cherie Gagne
Johanna Green
Executive & Development Director
MS Society of Canada, Lloydminster Chapter
inspiration (noun)
1. The act of inspiring or breathing in.
2. The act or power of exercising an
elevating or stimulating influence upon
the intellect or emotions; the result
of such influence which quickens
or stimulates; as, the inspiration of
occasion, of art, etc.
In the fight against MS, each
of us draws inspiration from
different experiences or
people who have touched us in
meaningful ways. I want to tell
you a story about a woman who has
done just that.
The first time I met her, Cherie
Gagne was already living at the Dr.
Cooke Extended Care Centre in
Lloydminster. Since her MS diagnosis in
2001 at age 50, the disease had taken
a serious toll on her body, taking away
the use of her legs and necessitating
her move into a room at the Dr. Cooke.
As a staff member with the Lloydminster
Chapter of the MS Society, I had the
opportunity to visit Cherie many times
in that room. Though my ‘friendly visits’
were intended to provide company to
help ward off the loneliness and isolation
that can be so commonplace in that
setting, I quickly realized that our visits
had become just as vital to me as they
were to Cherie. After a long or difficult
day, I could visit Cherie and instantly
be uplifted and reminded of the truly
important things in life. Despite having
so many valid reasons to feel sorry for
herself or angry at the world, Cherie was
just the opposite. She always found a
way to make others laugh, and the smile
that spread across her face each time I
4 MS Connections Winter 2012/2013
Cherie proudly shows off her new power
wheelchair.
walked through her door was infectious.
Whenever we talked about her MS, she’d
say she would rather be up against the
disease than have to see someone else
facing it. That mindset remained with
her, even through the difficult days – the
days when the disease kept her in bed
for extended periods, or when a facility
quarantine prevented even her own son
from being able to visit her.
As a Chapter, it’s been a priority
for us to reach out to our members
living in long-term care. It has become
a Christmas tradition for our staff and
Board Members to make special visits
to our care facilities, where we’ve given
a small gift and spent time visiting with
residents living with MS. Through our
Handivan funding program, we’ve also
helped ensure that members who
are in wheelchairs or scooters don’t
lose their independence because
of limited mobility. Covering their
Handivan transportation costs has
given our long-term care residents
the freedom to attend any Chapter
program or event they’d like, and we
hope it’s also made them feel part of
our ‘MS family’. I remember greeting
Cherie when she arrived in the van
for Chapter events – every time, her
beaming smile said it all.
Several years ago, thanks to
funding from a third-party golf
tournament, we were able to create a
Scooter/Power Wheelchair Funding
program within our Chapter. It was
a special moment to be able to tell
Cherie that she had been approved
for this program. I remember the
thrill of visiting Cherie and seeing
her renewed energy as she showedoff
her new power chair. In her own
words, “It was a Godsend! It’s so
much easier to get around and gives me
much more independence to make trips
outside my care home.” In the summer
of 2008, our Chapter was also able to
help send Cherie to Camp Health Hope
& Happiness. She came back with many
photos and great memories from her
adventure.
But nothing we’ve done for Cherie
can compare to the richness she’s
brought to our Chapter. A dedicated
volunteer, Cherie has been a welcome
presence and helping hand at countless
Chapter programs and events. Cherie
has also been an inspirational fundraiser.
Since she started raising money for the
Lloydminster Enerflex MS Walk in 2007,
...continued on page 13

Gilenya approved as second-line MS
therapy in Alberta
First MS oral therapy in Canada
People living with relapsingremitting
MS (about 75% of
people living with MS) have
another tool in the toolbox when
choosing an MS treatment. On
November 16, 2011, Canada’s Common
Drug Review (CDR) recommended
that Gilenya (fingolimod), the first oral
disease modifying therapy, be reimbursed
through provincial and territorial public
drug programs. Earlier the same year,
on March 9, Health Canada approved
Gilenya for use in people who have
tried one or more MS therapies, but are
unresponsive or intolerant to them.
Immediately following CDR’s
recommendation, the MS Society of
Canada, Alberta & NWT Division, wrote
to the Alberta Government’s Minister of
Health asking to expedite the process to
have Gilenya covered on the provincial
Drug Benefit List.
We’d like to welcome a new
member to our ranks! Last
February, Dean Walker joined the MS
Ambassador Program determined
to make an impact. “I would like to
do advocacy work at the Corporate
and Government levels to help raise
awareness when it comes to making
policies for their employees with MS
and other disabling diseases,” says
Dean.
Dean was born and raised in
Edmonton and has been married
to his wife, Deanna, for 25 years.
Together, they have three children:
“We were pleased to learn of the
Alberta Government’s decision to
include Gilenya on the Drug Benefit List,”
said Neil Pierce, President, MS Society of
Canada, Alberta Division. “Alberta is the
only province in Canada to date that has
listed Gilenya as a second-line therapy,
creating greater access and choice for
people living with MS.”
“Hope is hard enough for people who
suffer from MS, or who watch a loved
one struggle with it,” said Fred Horne,
Alberta’s Minister of Health. “It is even
harder when established therapies either
don’t work or cause severe side effects.
Alberta is pleased to make this option
available to improve the quality of life for
people with MS.”
“It’s very exciting to have an oral
therapy for MS,” said Julie Kelndorfer,
who lives with MS. “Every other MS
therapy is administered by either self-
A United Voice for the
Cause and Cure
Focusing on MS and work-related issues
Ethan, Shaelyn and Melissa. During
the day, he’s the Production Supervisor
for a company that manufactures
tools for the oil field, and in his
spare time he’s the Commanding
Officer of an Edmonton Army Cadet
Corps, is involved with The Legion of
Frontiersmen and The Canadian Club
of Edmonton, and is currently taking a
business management program at the
University of Alberta.
Dean is no stranger to the MS
Society. He’s been involved in multiple
events including the MS Car Raffle,
the A&W Cruisin’ for a Cause, and
injection or IV infusion which can come
with a series of side effects. With an oral
therapy, all of the side effects caused by
the injection will be eliminated.”
About Gilenya
Gilenya is the first oral diseasemodifying
therapy for relapsingremitting
MS to be approved in
Canada. It is manufactured by Novartis
Pharmaceuticals Canada Inc. On
November 16, 2011, Gilenya received the
CDR recommendation that it be available
for reimbursement through
Provincial and territorial public drug
programs. On September 1, 2012 the
Alberta Government made Gilenya
available on the Alberta Drug Benefit
List. The criteria for Gilenya can be found
on the Alberta Drug Benefit website
(https://www.ab.bluecross.ca/dbl/pdfs/
ahw_september.pdf)
the Edmonton MS Walk. What’s his
motivation? “My dad passed away
from a very rare form of MS, Acute
MS. From diagnosis to death was 18
months,” he says. “My dad’s life was
impacted by MS for 18-24 months;
mine has been impacted by it for the
past 29 years. After witnessing what
this disease did to my dad and seeing
the effects it is having on a friend of
mine, I wanted to learn more and get
involved.”
MS Connections Winter 2012/2013 5

Last summer, Chris Anderson
rode his motorcycle across
Canada and raised over
$20,000 for the MS Society
Ro lin’ Down Highway
Chris Anderson has become
an inspirational sensation,
completing a 34-day motorcycle
trek across Canada last summer for his
sister, Erin, who has MS. Chris, who is
an Edmonton Police service member,
came up with the idea after his sister
was diagnosed in 2010. He contacted
MS offices across Canada and organized
this incredible journey with his friends,
family and colleagues on board, and even
joining him when they could. When he
mentioned the plan to his dad, Dave, he
also jumped on board to ride the whole
length, side-by-side with Chris.
Chris and his father Dave flew to St.
John’s Newfoundland where they started
their voyage across Canada on July 17.
Their route took them west through most
of the major cities across Canada to Tofino,
BC, and then headed back up through
Banff and Jasper on their way back to
Edmonton on August 19. Along the way,
6 MS Connections Winter 2012/2013
the
they met with the local
media and MS Society chapters
to share their incredible story.
On August 8, about halfway
through Chris’s journey, Erin emailed
him some photos with a note
that said: “Chris, I was thinking
that you might be getting
tired of dealing with crazy
drivers, intense weather
and road conditions,
unexpected
hiccups along
the way,
loss of
equipment,
bugs etc. I just wanted to remind you
why you are doing this ride and how
much it is appreciated. These are pictures
from when I was in the hospital last
summer. Unable to walk, unable to feel
my body. Being diagnosed was a scary
time and this was hands down the worst
experience of my life. Not knowing if I
would ever regain feeling or be able to
walk again. Having to rely on others to
help me with even the simplest of tasks.
Thank you for pushing along despite the
challenges and doing this for Canadians
with MS, as we will ALL benefit from your
efforts!! Thank you and keep on Rollin!!!”
On August 19 (the 34th and final
day) they came to the last 200 km of
their trek and were greeted by the Blue
Knights police group. The group escorted
them into Edmonton, and even had
Erin in one of the cars! They finished at
the Alberta Legislature grounds where
they were welcomed by a police salute,
bagpipes, media, MS Society staff, family
and friends. “I’m glad that I was wearing
dark glasses as I rode up that hill because
...continued on page 13
Chris (left) with his sister Erin and dad, Dave, at the finish line in Edmonton.

Ask
Jeannine
I’m thinking of stopping my disease modifying
therapy (DMT) which I have been taking for
many years. What are the risks?
Answer: When you discuss stopping
therapy with your specialist, he or she
may have some answers for you. Often
when you are newly diagnosed, your
disease is quite active for a few years
but then seems to
become
less
active.
If you are
not having
relapses and
your MRI does
not show new
activity it is probably quite safe for you to
stop therapy.
Are you stopping therapy because
you are tired of taking the injections? If
so, perhaps a small “drug holiday” will
give you some respite and you may be
happy to restart after a small break.
There is no real consensus regarding
the discontinuation of DMT. Some
Jeannine Christopherson, a MS nurse and retired
Outreach Coordinator with the MS Society, Edmonton
Chapter, will answer your questions about MS.
If you would like to ask Jeannine a question, email it to
info.alberta@mssociety.ca or call the editor,
Angie Mah, at 780-463-1190 or 1-800-268-7582.
physicians think you should stay on
it even if you are stable. If a person’s
disease changes to progressive
while on therapy, most
physicians
concur that
DMT should
be stopped.
There have
been many cases
of benign (very
mild) MS where
the patient
has never
taken
DMT
and they
have
relapses
from which they
recover completely.
If your previous relapses were mostly
sensory symptoms like numbness and
tingling, you may continue to have them
but they are often mild.
Unfortunately I cannot predict
frequency, but again would have to look
at how often you had relapses prior to
therapy, bearing in mind your disease
may be much less active than it was at
Thank you Volunteers!
diagnosis. With your help, our events across the province continue
to be a success year after year. Each and every one of
you is helping us get one step closer to ending MS.
MS Connections Winter 2012/2013 7

Volunteer Profile
Long-time volunteer keeps
coming back for more
John Huk, Edmonton
How did you first get involved with the
MS Society?
I first got involved after attending a
workshop to help people dealing with
their diagnosis of MS. This wonderful
course offered me a positive insight into
dealing with my MS diagnosis through
interaction with other people with MS
as well as listening to how other family
members, spouses, and supportive
friends dealt with this disease. It was
during these sessions that I found out I
was not alone in dealing with MS and this
helped ease the fear and deal with the
anger I felt. I guess with this new insight
and positive attitude from other MS
Society mentors, I came to the realization
that I could either do something to help
myself and the MS Society, or I could hide
in self-pity and remain afraid, angry and
disillusioned.
What is your best memory volunteering
with the MS Society?
The best memory I have of volunteering
is really the interaction with all the
MS Society members during the MS
Walks and Bike Tours. It really is seeing
everyone’s smiling face or, as corny as
it may sound, hearing their words of
thanks that really makes the volunteering
experience all the more memorable.
What would you tell someone who is
thinking about volunteering for the MS
Society?
That the experience they receive would
not only fulfill the needs of the MS
Society but it would also fulfill their own
need to feel that they made a difference.
No matter what they did, the part they
played supports the other many parts
that help the MS Society as a whole. And
the heartfelt thanks they get from the
8 MS Connections Winter 2012/2013
walkers and riders and members makes
the experience all the more worthwhile!
I have been lucky and blessed to maintain
my MS disease with no relapse for
over 12 years. It is with the help of my
doctors, the MS Society, loved ones and
friends, that I feel confident and hopeful
about my future years. I really no longer
dread the next day, but look at it with
confidence and hope that this disease
will be conquered and that all of us in
the future will be able to live a healthy
and productive life. The MS Society has
a vast resource of individuals who with
positive attitudes are actively helping
reshape attitudes of individuals recently
John Huk has volunteered with the
MS Society for the past 8 years and
has been involved in numerous events
including the MS Bike Tour – Leduc to
Camrose, the St. Albert and Edmonton
MS Walks, and a couple of golf
fundraisers.
diagnosed with MS and giving them hope
about the future.
MS Support Groups in Alberta
Battle River /Wainwright — call 1-800-268-7582.
Brooks — call the Southeastern Chapter office at 403-529-6797.
Calgary — call 403-250-7090 for further information.
Camrose — call Alberta Division: 1-800-268-7582.
Drumheller — call Karen at 403-820-7863.
Edmonton — call 780-471-3034 for further information.
Fairview — call 780-835-4868 for further information.
Fort McMurrary — call Alberta Division: 1-800-268-7582.
Hinton — call Geke at 780-740-5692 for further information.
Lethbridge — call 403-328-7002 for further information.
Lloydminster — call 780-871-0513 for further information.
Medicine Hat — call 403-529-6797 for further information.
Pincher Creek /Crowsnest — call 403-328-7002 for further information.
Red Deer — call 403-346-0290 for further information.
South Peace/Grande Prairie — call 780-532-3204 for further information.
St. Paul, Bonnyville, Lakeland — call Brenda at 780-645-3441 ext 226
for further information.

Putting the
Patient First
Campaign for Barrier-Free Health and
Medical Services in Alberta
Through the years, the
Alberta Committee of
Citizens with Disabilities
(ACCD) has heard people with
disabilities express frustration
over barriers to health care
in Alberta. Some experience
physical barriers; others
encounter communication
barriers; and many feel they are
not given enough time with their
doctor to have their needs met.
This is only a broad description
of the barriers. Indeed, the
issues are deeper and more
complex.
ACCD has started an
awareness campaign about
the issues that people with
disabilities experience when
accessing health and medical
services in Alberta. Healthcare
is a necessity, and preventative
health services are important
for a healthy productive life. We
ask you to support meaningful
changes that will improve
access to health and medical
services for Albertans with
disabilities and their families.
We need your help to
ensure that Albertans with
disabilities receive equitable
access to medical and
diagnostic health services. Your
voice can be the difference in
convincing our leaders that
improved access to diagnostic
and preventative health services
will reduce the likelihood of
undetected and untreated
serious illness and injury for
people with disabilities.
You can make a difference
by sending a letter to your
elected and appointed
government representatives by
asking them to encourage the
following:
• Education and training should
be provided to doctors and other
healthcare professionals about
people with disabilities and
disability-related issues.
• Increased collaboration
between doctors, people with
disabilities, and the health care
system to find solutions to
accessible health and medical
services for people with
disabilities.
• The Alberta Family Care
Clinics and Primary Care
Networks must be accessible to
Albertans with disabilities.
• Only accessible medical
equipment should be purchased
for the benefit of all Albertans.
Doctors’ offices, diagnostic
clinics, and medical equipment
should be included in the Alberta
Building Code.
• The College of Physicians
and Surgeons Standards of
Professional Behaviour and Good
Practice Expected of Alberta
Physicians should include a duty
to accommodate standard.
The Government of Alberta
should fund only services that
are accessible to all Albertans,
including people with disabilities.
You can help bring about change!
Be part of collaborative problemsolving!
To learn more about this
initiative and how you can
contribute please visit www.
accd.net, email barrierfree@
accd.net, or call 1-800-387-2514.
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Any questions? See me fi rst
MS Connections Winter 2012/2013 9

Awwwesome
ALBeRTA!
thank you to everyone in
Alberta who supported Cruisin’
for a Cause by buying a teen
Burger and making a donation.
thank you to all of our
volunteers and ambassadors
who connected with A&Ws
around the province to help
out on Cruisin’ day. together
we raised $1.25 million across
Canada, and $418,000 in
Alberta.
You rock Alberta!
10 MS Connections Winter 2012/2013

Exercising with MS: Tips and Advice for the Gym
Being active and exercising can be
a daunting task. This article offers
some helpful tips and advice that
may aid you in being active with MS. First
and most important is to be creative and
experiment. Let your mind wander and
don’t be afraid to try something new;
you’ll never know what kind of passion
you’ll have for an activity until you’ve
tried it.
If just starting out, start slowly.
Nothing crashes an MS exercise program
like going full tilt and wiping yourself
Shoppers Home Healthcare
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Here are some important reasons why
you should consider buying your next
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out for a week. Think ‘easy does it’, even
if it means just a few minutes a day,
increasing over time. Always listen to
your body. With MS, it is easy to go over
your fatigue limit. If you still feel awful
and tired days after exercising, you’ve
worked out too hard and need to ease it
back. Remember your meds as you may
need to structure exercise around them.
Interferons, for example, make some
people feel uncomfortable the next day;
plan around those times.
When at the gym there are many
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things to consider:
• Stay cool. While heat won’t trigger
an attack, it can exacerbate your MS
symptoms. Before working out, look up.
You’ll want to park yourself closest to
ceiling fans, floor fans, or air conditioning
vents. If it’s winter, avoid areas blowing
hot air.
• Train in bursts. Fatigue or weakness
can come on very quickly. Try spacing
out your hard exercises with frequent
breaks. Mini workouts combined produce
essentially the same benefits as one long
one.
• Seek support. Exercise machines
(i.e., recumbent bike) can offer support.
They tend to be more comfortable and
safe to use, especially if you experience
balance and coordination issues, unlike
treadmills which require your full body
weight.
• Mix it up and adapt your workout. If
you do just one cardio exercise or stick
to just a few machines, you could create
muscle imbalance. Keep changing your
...continued on page 15
training on all products
• Available finance and leasing options
• Reasonably priced pick up and
delivery service available for repairs
We are…
• A certified dealer for every major
manufacturer of wheelchair
accessible vans & equipment
• A member of the Used Car Dealer
Association
• A member of the Association for
Driver Rehabilitation Specialists
(ADED)
• A member of the National Mobility
Equipment Dealer’s Association
(NMEDA)
MS Connections Winter 2012/2013 11

RemyeLinATion
The Next Frontier in MS Therapeutics
Nabeela Nathoo, MD/PhD Candidate,
University of Calgary
Until now, treatments for
multiple sclerosis (MS) have
focused on preventing further
damage to the central nervous system
(consisting of the brain and spinal
cord). This has been achieved using
various immunomodulatory treatments,
including agents such as Copaxone
(glatiramer acetate), Avonex (interferon
beta-1a) and Rebif (interferon beta-1a),
which have been around for many years,
as well as newer drugs such as Gilenya
(fingolimod). However, repairing the
damage already done in MS is another
significant area to consider. This repair
can come in the form of remyelination,
which is the process of making new
myelin to replace the myelin that has
been lost by being stripped off the axon
(nerve fibre) in MS. Typically, myelin acts
as an insulator for the axon, effectively
speeding up the conduction along the
nerve fibre. The loss of myelin slows down
conduction along the nerve fibre, resulting
in some of the symptoms seen in MS,
including double vision, heat sensitivity,
and difficulties with coordination and
balance. Myelin also has a role in
protecting and helping to keep the axon
alive. Generating new myelin sheaths, or
remyelination, would spare the axon and
could return electrical conduction along
nerves to a near-normal level, enabling
12 MS Connections Winter 2012/2013
neurons to better communicate with each
other, and ultimately enhancing functional
recovery in MS.
Myelin is produced by cells called
oligodendrocytes. Oligodendrocytes are
the endpoint of the differentiation of
oligodendrocyte precursor cells (OPCs).
OPCs are considered to be a type of adult
neural stem cell. OPCs are activated in
“...the existence
of a hostile
environment for
remyelination is
a factor in why
remyelination fails
in MS.”
a site of demyelination, where they give
rise to oligodendrocytes to make myelin
and restore the demyelinated area to
being myelinated again. Unfortunately,
the process of remyelination often fails in
MS. One reason why remyelination fails
in MS is because OPCs that are present
at the lesion site fail to differentiate into
oligodendrocyte
precursor cells
(OPCs)
myelin debris
inhibitory molecules
oligodendrocytes, and therefore myelin
cannot be produced. OPCs cannot
differentiate into oligodendrocytes
because demyelination causes
myelin debris, and if this debris is not
cleared, then OPC differentiation into
oligodendrocytes is inhibited. Not being
able to clear myelin debris is a problem
in MS. The cells that clear myelin debris
are called macrophages. Sometimes
these macrophages are not activated
or recruited fast enough to the lesion
site, which prevents remyelination from
taking place in a timely fashion. It is clear
that remyelination and how it fails in MS
is a complex problem. To add further
to this issue, the presence of certain
compounds in MS lesions also plays a
role in preventing OPC differentiation.
Therefore, the existence of a hostile
environment for remyelination is a factor
in why remyelination fails in MS.
Knowing all of this, how can we
enhance remyelination in MS? One
approach is to implant stem cells into the
central nervous system. However, there
are some concerns with this option – one
is that MS lesions tend to be in various
parts of the brain and spinal cord, so
localizing these stem cells to where they
mature
oligodendrocytes
myelin
Figure 1. Schematic showing process of myelin formation and inhibitors of myelin
formation. These inhibitors of myelin formation (myelin debris and inhibitory
molecules) Figure 1. Schematic function at the showing level of process preventing of myelin oligodendrocyte formationprecursor and inhibitors cells of
(OPCs) myelin from formation. becoming These oligodendrocytes.
inhibitors of myelin formation (myelin debris and
inhibitory molecules) function at the level of preventing oligodendrocyte
precursor cells (OPCs) from becoming oligodendrocytes.

are needed is challenging. Second, and
equally important, is that adding stem
cells into an environment which inhibits
their differentiation into oligodendrocytes
already may not help create myelin as
effectively as one would hope. Another
approach, one which is gaining popularity
in the field, is to enhance the activity of
the OPCs already present. One way to
do this is by removing inhibitors of OPC
differentiation, which would allow OPCs
to differentiate into oligodendrocytes
that would make myelin, ultimately
enhancing remyelination. An example
of a compound that inhibits OPC
differentiation is a protein called
LINGO-1. Applying an inhibitor of
LINGO-1 was shown to enhance
remyelination in animal models of MS,
“Research on
understanding
remyelination better
and on creating
remyelination
therapies is
ongoing....”
promoting the differentiation of OPCs
into oligodendrocytes. An inhibitor of
LINGO-1 has completed a phase I clinical
trial with no evidence of intolerable side
effects.
Research on understanding remyelination
better and on creating remyelination
therapies is ongoing, signaling the
next frontier in MS therapeutics–one of
regeneration and repair. The hope is that
remyelinating agents can complement
immunomodulatory agents to create a
better treatment paradigm for those living
with MS.
Further reading:
Huang JK, et al. Myelin Regeneration in
Multiple Sclerosis: Targeting Endogenous
Stem Cells. Neurotherapeutics. 2011.
8:650-658.
Kotter MR, Stadlemann C and Hartung
HP. Enhancing remyelination in disease–
can we wrap it up? Brain. 2011. 134:1882-
1900.
Inspiration
...continued from page 4
she has raised more than $4,500 – all
from within her small room at the Dr.
Cooke. She has proudly captained her
own Walk team – The Dr. Cooke Walkers
– and if you ask anyone who works at
or frequents the facility, they’ll tell you
she’s likely asked them to pledge her for
the Walk! Cherie’s willingness to be so
involved has never ceased to amaze me
– even with the challenges posed by her
limited mobility, Cherie always found a
way to champion the cause.
This summer, Cherie called our
office, upset. She had taken ill, and was
devastated that she wasn’t going to be
able to get to A&W on August 23 for
Cruisin’ for a Cause Day. We decided that
if Cherie wasn’t well enough to come to
the event, we’d try to bring a piece of the
event to her. Words can’t describe the
joy on her face when we made a surprise
visit to her room on August 23, with a
Teen Burger, onion rings, and a rootbeer
in hand!
At the time, we didn’t know that
would be the last event we’d share with
Cherie. On September 20th, Cherie
Gagne passed away in her room at the
Dr. Cooke, at the age of 61. Her loss has
been felt by our entire Chapter, and her
presence will be deeply missed. On a
rollin’ Down the Highway
...continued from page 6
as soon as I heard the bagpipes and saw
the salute I got pretty emotional,” said
Chris. “The successful ride coming to an
end, combined with the salute, pipes, and
seeing my family and friends again made
this something that I’ll never forget.”
Chris has raised an incredible amount
for the MS Society! “$9,253 came out
of our own pockets, and the $20,870
raised went directly to the MS Society of
Canada. $9,253 is a lot to spend, but the
personal note, I can say that my life has
been enriched because of the five years
I was able to spend with Cherie. During
the time that I knew her, Cherie never
complained about the things MS had
taken from her. Rather, she was always
thinking of ways she could give back
and maybe help make a difference for
someone else who is yet to be diagnosed.
She was a true inspiration, demonstrating
to me and so many others what is
possible through commitment, heart
and sheer will. At her funeral, among the
special items selected to honour Cherie’s
memory were her Walk t-shirts, a Walk
medal, a special certificate recognizing
her MS Society loyalty, and a souvenir
from her Camp He Ho Ha trip.
I hope that as a Society, we were able
to help make even a small difference in
Cherie’s quality of life; but it does not
compare to the impact she’s made on
mine. One of the definitions of the word
‘inspiration’ is: ‘the act of inspiring or
breathing in’. I can say without question
that Cherie has breathed new purpose
into my life. She will continue to inspire
me, and is a daily reminder of the
importance of our mission and why we
all need to continue fighting to end this
disease.
return on investment, both monetary and
in awareness, is invaluable,” said Chris.
“I’ve met some wonderful people, seen
our beautiful country from coast to coast,
and have hopefully made a difference in
the fight against MS.”
You can read more about Chris’s ride
for MS at www.msride.ca, where he has
his route, a blog, and all his checkpoints.
He’s still collecting money through his
website for the cause.
MS Connections Winter 2012/2013 13

2013 MS Event
Fundraising Dates
Enerflex MS Walk
BROOKS
JUNE 2, 2013
Enerflex MS Walk
CALGARY
JUNE 2, 2013
Enerflex MS Walk
DRUMHELLER
TBA
Enerflex MS Walk
EDMONTON
MAY 26, 2013
Enerflex MS Walk
FORT MCMURRAY
TBA
Enerflex MS Walk
GRANDE PRAIRIE
MAY 26, 2013
MS Bike Tour
LEDUC TO CAMROSE
JUNE 8 & 9, 2013
MS BIKE TOUR
AIRDRIE TO OLDS
JUNE 8 & 9, 2013
Enerflex MS Walk
YELLOWKNIFE
TBA
Enerflex MS Walk
LETHBRIDGE
APRIL 27, 2013
Enerflex MS Walk
LLOYDMINSTER
APRIL 27, 2013
Enerflex MS Walk
MEDICINE HAT
JUNE 23, 2013
Enerflex MS Walk
RED DEER
MAY 26, 2013
Enerflex MS Walk
ST. ALBERT
APRIL 28, 2013
Enerflex MS Walk
ST. PAUL/LAKELAND
MAY 11, 2013
MS BIKE TOUR
RED DEER
JUNE 8 & 9, 2013
MS BIKE TOUR
MOUNTAIN (HINTON)
SEPTEMBER 7 & 8, 2013
MS BIKE TOUR
MOUNTAIN (CANMORE)
AUGUST 24 & 25, 2013
14 MS Connections Winter 2012/2013
The MS Read-A-Thon
We can end MS and all you have to do is read!
Sharing stories is the heart
of the MS Read-A-Thon in
Alberta! Now in its 36th
year, the Read-A-Thon is the
longest running fundraiser for
the MS Society of Canada. It’s
a great way to teach kids about
multiple sclerosis and give them
an opportunity to do something
to help at an early age. With
a focus on reading, the Read-A-
Thon program visits registered
schools and challenges students
to read as much as possible over a
three-week period. To incorporate
physical activity, we also offer a
one-day Read & Walk option.
Teachers are busy people so
we work hard to keep
the program
simple to
run. To get
the kids
revved
up, we
visit the
majority of
the schools
and do a
30-minute
presentation about MS and the
Read-A-Thon. If we can’t reach
the school for a presentation,
we also have a “Read-A-Thon in
a Box” option which provides all
of the presentation materials.
The only thing the teachers have
to do is encourage their kids to
read! At the end of the three
weeks, we arrange for the return
of everything to our office through
our friends at Brinks Canada.
We challenge the kids to set
reading goals and offer incentives
for reading and fundraising
milestones. Sharing the story of
multiple sclerosis and the people
who are affected in a non-scary
way is also important in the
Read-A-Thon. We want the kids
to be informed and interested.
By teaching kids about MS and
encouraging them to read, we’re
engaging them to know more
about something they may not
understand and to become
part of a larger movement. We
show the kids that even doing
something simple like reading
can have a huge impact.
The Read-A-Thon is a farreaching
program in Alberta.
Rural communities are very
involved in the Read-A-Thon
and we have schools that have
participated for over 20 years!
With a team of dedicated
volunteer presenters, we have
been in schools as far north
as Peace River and
as far south as
Lethbridge (and
everywhere
in between!).
By the end
of October
2012, we will
have presented
to 16,522 school
kids at 77 schools
across the province.
Want to get your school
involved with the MS Read-
A-Thon? We still have spots
available for our Winter (Jan
– beginning of Feb) and Spring
(March – beginning of April)
sessions. You can register
online at www.msreadathon.ca
or by calling 1-800-268-7582.
Schools that complete the MS
Read-A-Thon will receive a $100
Scholastic Voucher! We’re
also looking for presenters
in Calgary, Central Alberta
& Fort McMurray. For more
information, contact Trish at
trish.vandoornum@mssociety.
ca or 1-800-268-7582.

Summer of Fun
Lloydminster MS Kids Kamp
This summer, the Lloydminster Chapter once again hosted its
annual MS Summer Kids Kamp. The week-long program is
designed to teach children about MS, allay their fears, and
empower them. The Kamp is open to children who have a family
member with MS, or who are living with the disease themselves.
Through games and crafts, the children learn about MS, and it’s
always amazing to see how much they retain over time. Kids Kamp
also offers experiences for the kids that they might not otherwise get
because of limited mobility by a parent or financial limitations. To
this end, we’ve incorporated field trips into the daily Kamp schedule.
This year we were able to take the kids horseback riding thanks to
some generous help from a local business owner. We also took them
swimming and to the petting zoo. It’s truly heart-warming to see how
excited the kids get for these outings.
This year’s Kamp also offered up a unique opportunity for one
young participant. The local TV station did a story on the Kamp, and
he was interviewed as part of the piece. He was attending the Kamp
with his two younger twin brothers, one of whom has MS. It was a
special moment for him to be able to answer the reporter’s questions
about MS and how the Kamp is beneficial for him, and then watch
himself on TV that night!
Even though the Kamp is designed for children between the ages
of 5 and 12, we’re fortunate to also recruit the help of participants’
older siblings - who often get more out of the Kamp than they mean
to, demonstrating sincere leadership skills and responsibility. It’s
been wonderful to see them rise up and shine as young adults.
...continued from page 11
program to keep your body on its toes
and your motivation at its peak. On days
your legs may not want to cooperate,
or your arms, avoid heavy cardio. For
example, use an arm ergometer; while
it might not be exciting, it will work up a
sweat.
• Don’t be afraid to monopolize
a machine. Normally this would be
poor gym etiquette, but if you use a
wheelchair, scooter, or a mobility aid,
forget etiquette. It’s best to grab a
machine that does many different types
of exercises. This will minimize the need
to move around, maximizing your energy.
• Enjoy a break. Take at
least one day off every week
to give your body time to
rest. You deserve it!
The last tip to leave
you with, research local
programs. The MS Society
offers many exercise
programs and classes geared
to people with MS. Give
them a try; you might find
something that is perfect for
you. Always remember there
are numerous ways in which
to get active.
For additional tips and
advice contact the MS
Society at 1-800-268-7582
or active@mssociety.ca.
A Lloydminster Kids Kamp participant does an
interview with Newcap Television about the Kamp
and his younger brother’s MS.
MS Connections Winter 2012/2013 15

support your ms society through
United way and Health Partners
Did you know, when you give to United Way or Health Partners, you
can designate the MS Society as the recipient of your donation?
As a donor, you naturally
want to make sure
your dollar supports
the causes most important
to you and makes the biggest
impact. Through the United
Way, the generosity of Albertans is
making it possible to do good work in our
communities and support people in need.
United Way creates partnerships
with other organizations, community
members, businesses, and governments
to work together to target and solve the
complex problems that individuals and
communities are dealing with. Because
the United Way and its network is so
vast, the money from donations is able
to go farther and help more people with
their programs and services.
The MS Society is also dedicated to
providing programs and services to our
MS community that have a lasting impact
on people living with multiple sclerosis.
Some of the programs we are able to
provide include Friendly Visiting, Art for
STAY INFORMED!
The MS Society is committed
to reaching out to all Albertans
with MS. If you know someone
who would like to receive
a complimentary copy of MS
Connections, please call us at
1-800-268-7582.
Publications Mail Agreement 40064145
Return undeliverable items to:
MS Society of Canada
Alberta & Northwest Territories Division
#150, 9405 - 50 St, Edmonton T6B 2T4
16 MS Connections Winter 2012/2013
the Heart, Couples Getaway, Kids Kamp,
Teen Escape and approximately 20
support groups across Alberta.
When you give to the United Way,
did you know that you can designate
the charity that you would like your
donation to support? Your support
through the United Way will ensure
that this continues for years to come.
While the MS Society’s Edmonton &
Capital Region Chapter is not a member
of the United Way, other MS Society
Chapters throughout Alberta have been
accepted as members. Even if your city
or Chapter is not a member, you can
still designate the MS Society as the
beneficiary of your donation.
As an active volunteer and board
member of the MS Society’s Alberta and
NWT Division, Kevin O’Neil is always on
the look-out for additional and innovative
fundraising opportunities. “My company
(Stantec Consulting Ltd.) encourages
staff to contribute annually to its United
Way campaign, and
this is an excellent
way to ensure that
individual donations
are directed to the
MS Society”, says Kevin.
So, this year, when you receive the
United Way Campaign appeal at work,
please consider supporting the MS Society
in your community.
Federal government employees can
also choose to donate through Health-
Partners to the MS Society. HealthPartners
is a charitable organization that
enables federal government employees
to have the ability to donate through their
paycheques to help member organizations
provide patient services, health
education and support medical research.
Please visit www.healthpartners.ca for
more information.
If your company or organization
would like more information about MS or
the MS Society, we have eager MS
Ambassadors who would love to do a
short presentation for you at your workplace.
Please contact us at 780-463-
1190, 1-800-268-7582 or info.alberta@
mssociety.ca for more information or to
book your presentation today!