Fall/Winter - Multiple Sclerosis Society of Canada

Hope
Heroes To
Fall / Winter 2012 Across BC & Yukon
THIS ISSUE
Listening to people affected by MS 2
Self-help grows 3
Segal family leading the way to end MS 4
MS Society Research Chair appointed 5
Fundraising heroes and events 6 & 7
BC & Yukon Round up 8
Publications Mail Agreement No. 40063333
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1501-4330 Kingsway
Burnaby, BC V5H 4G7
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to enhance their quality of life.
MEMBERSHIP RENEWAL
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2
MS Hope MS Heroes | Fall/Winter 2012
MESSAGE FROM THE CHAIR AND PRESIDENT
It is that time of year to renew your membership
in the Multiple Sclerosis Society of Canada, or if
you are not currently a member, it is a great time
to join the Society. While membership may not
bring many fancy benefits, a strong membership
base means the Society can continue to
advocate strongly for systemic changes that
will improve quality of life and increase support
for MS research, so that time spent filling in
the application does bring a benefit to people
affected by MS.
Many members and volunteers throughout the
organization or across the country contributed
their time and intelligence during the Renewal
process that the MS Society initiated at the
beginning of the year. The Renewal process
is meant to enable the MS Society meet the
growing needs of those affected by MS and
increase funding for MS research and make the
organization more efficient and effective as we
move forward towards finding a cure. Groups are
now working on an implementation plan will be
considered by the national board of directors in
December.
ADVOCACY UPDATE
Listening to
People Affected by MS Initiative
Launched
This initiative is a multi-pronged evaluation
(consisting of a poll, survey, and focus groups)
which has the single purpose of hearing from
Canadians affected by MS about their quality of
life priorities, needs, and barriers. The MS Society
wants to hear from you in order to improve
programs, services and advocacy work. Tell us
about your quality of life priorities, your needs,
and the barriers you face.
How can I have my voice heard?
Help us make a difference. Share your
insights through our anonymous nationwide
survey. We want to hear from:
• 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?
• What are your biggest worries?
When and how will the survey be available?
The survey is available in November 2012. Online:
go to mslistening.ca For a paper copy: call 1-800-
268-7582 (BC) or 1-866-991-0577 (Yukon), to
obtain a paper copy.
You can also share your responses over the phone
by calling 1-866-922-6065 ext. 3212
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
the quality of life needs, priorities and barriers
faced. As well, you will hear how the MS Society
plans to make a difference. Stay tuned.
More information at mslistening.ca
The fall has been a very busy time for chapter
offices. Staff wrapped up their fundraising events
and then organized a plethora of educational
and social functions. The success of the two
newest MS Bike tours in the Okanagan and West
Kootenay areas gives us two fresh opportunities
to engage new supporters and spend some time
with those already connected to the Society.
Newly diagnosed workshops and presentations
to enhance knowledge about MS treatments
and lifestyle options provide another valuable
opportunity to build community among those
affected by MS.
In the world of research, we congratulate Dr.
Anthony Traboulsee on his appointment to the
MS Society Research Chair at UBC. Dr. Traboulsee
will also be the lead in the upcoming Phase I/II
CCSVI and MS treatment trial which has already
begun participant recruitment in BC. The MS
Society is proud to be a funder of this new step in
the CCSVI and MS investigation.
We wish you the best in the holiday season.
Janet Palm
President, MS Society, BC & Yukon
MEMBERS RECOGNIZED WITH QUEEN ELIZABETH II
DIAMOND JUBILEE MEDALS
The Queen Elizabeth II Diamond Jubilee Medal
marks the 60th anniversary of Her Majesty
Queen Elizabeth II’s accession to the Throne.
The Medal honours significant contributions
and achievements by Canadians. Four MS
Society members in British Columbia were
(Left)Joanne Williams, a recipient of the Queen
Elizabeth II Diamond Jubilee Medal. Photo by Kent
Wong. (Right) Brenda Worthington (centre) with Sara
Lazar and Dorit Hoffman. Photo by Katie Lapi.
Chair of the BC & Yukon Division Board of Directors,
John Folka took a tour of BC via bicycle. John rode
in all six MS Bike tours over the spring and summer
including the very first and soon to be very popular
West Kootenay Glacier Challenge.
LISTENING TO PEOPLE
AFFECTED BY MS
John Folka
Chair, MS Society, BC & Yukon
selected to receive the Queen’s Jubilee medals.
Congratulations to these people who are all active
contributors to the well-being of those around
them in their home communities. Each has
helped ensure the MS Society is responsive to the
needs of those affected by MS.
Congratulations to
Ron Jones, New Westminster
Joanne Williams, Kamloops
Adrianne Boothroyd, North Vancouver
Brenda Worthington, Vancouver
STAY IN TOUCH WITH US ON

MOVING FORWARD TOGETHER: MS SELF-HELP GROUP GROWS WITH THE SUPPORT OF DEDICATED VOLUNTEERS
Serendipitous is the word that leader Greg
Turnbull uses to capture the Maple Ridge/Pitt
Meadows self-help group.
What had started in casual conversation
with staff in the Lower Mainland Chapter has
developed into a supportive community which
features a massage therapist, acupuncturist, and
A Newly Diagnosed Workshop held in Burnaby
on June 2 provided an invaluable educational
platform through which the nervous, confused,
frustrated, or curious had the chance to voice
questions. The presenters, whose knowledge
spanned from the medical, to the emotional,
financial, and logistical obstacles that lay ahead
were able to cover the questions and concerns
fielded by the participants, who made it clear that
they were eager for the reality of the situation as
much as for hope and optimism.
Dr. Anthony Traboulsee, a leading MS neurologist,
was skilled in humanizing the approach
to understanding the disease. Within his
presentation he snuck in some badinage like
“sexy treatments,” and being able to take a “drug
holiday” (a break from medication), which greatly
helped to lighten the atmosphere. And after Dr.
Traboulsee provided a wealth of information
on the benefits of early treatment, currently
available treatments, and participating in clinical
trials, psychologist Dr. Donna Paproski offered a
digestion period during her step-by-step practice
reflexologist who all volunteer their time to the
group.
However, serendipity may not be the most
accurate way to describe how the self-help group
came together. It gives too little credit to Greg.
More likely it was a combination of determination,
a worthy cause, and a little bit of the right timing
that got them to where they are today. The
way the team was acquired is rewarding in its
simplicity. The massage therapist volunteered his
services even before Greg had fully assembled
the self-help group. Looking for a massage
table to use, they found one being sold by an
acupuncturist who, after hearing about what the
table was going to be used for, offered her time
as well. Then, after meeting Greg in her natural
health foods store, a reflexologist committed to
join the team.
The self-help group is open to anyone. Greg
FADING SCARS: REVEALING HOPE AT THE NEWLY DIAGNOSED WORKSHOP
in mindful relaxation.
A similarity between the panelists who made the
next presentation by sharing personal insight into
the disease, was that they had been ready to take
on the world before their diagnosis. However,
because of a disease that often demands rigorous
accommodation, they had to adjust their lives;
although, not necessarily for the worse. Many
people spoke of the chance to do a negativerelationship
cleanse, and speaker Gabrielle Veto
expressed all the things—like getting a dog and
joining a choir—that she “wouldn’t have had the
time to do if [she] didn’t have MS.”
The participants were brought together not
merely by a diagnosis but by a collective
enthusiasm for their futures. And if there was
one message from the day that everyone could
benefit from, it is this: in this moment, we have
the gift of being present.
The MS Society conducts free education events
in communities throughout BC and Yukon. You
MEMBERSHIP—JOIN OR RENEW NOW! MEMBER TO MEMBER
Photo by Marissa Ho
Over 60 years ago, Evelyn Opal learned she had
multiple sclerosis, at the time little was known
about MS. Evelyn was told to go home and
hope for the best. Instead, Evelyn took action;
she formed a group and raised money to fund
research into MS. Today, the group she founded
is the MS Society of Canada, one the most
respected health charities in Canada.
Renew your membership or join for the first
time and help build Evelyn Opal’s legacy. The
MS Society is valued across the country for
providing reliable, accurate trusted information;
for providing free supports in communities
small and large; and for creating opportunities
for researchers to advance their search for the
cause and cure for this life changing disease.
Your support is powerful. Membership benefits
include:
1. A vote at annual general meetings at
the national, divisional, and chapter levels.
Members shape the path of the MS Society.
2. Advance notice to free special events such as
live educational seminars and webinars.
3. Your voice adds strength to the collective
pool of members when we lobby government
for systemic changes that benefit people with
MS, such as improvements to income security.
4. Updates via e-news and newsletters
that help you stay in touch with MS Society
activities, supports, and the latest developments
in Canadian MS research.
by Marissa Ho
explains, “MS has no borders. [The group] is called
Pitt Meadows and Maple Ridge, but we have
people from Langley, Port Coquitlam, and Mission,
people with MS, friends and family of people with
MS.”
Since their first meeting in January 2012, Greg
has been invested in facilitating and creating an
environment for the members to help themselves.
“I’m trying to get [them] to step out of their shells,
to invest in their community ...The problems don’t
go away, but we have a bigger capacity, we can
always do more than what we already do.”
To connect with a self-help group in your
area, contact the MS Society chapter office in
your community. You can find a list online at
mssociety.ca/bc. No chapter office? Contact
Debbie Irwin at Debbie.Irwin@mssociety.ca or
604-689-3144, toll-free 1-800-268-7582 ext.7231.
In Yukon 1-866-991-0577.
by Marissa Ho
“I was diagnosed with PPMS at 51 and have never felt so out of
control and alone. I joined the MS Society in Edmonton and at
my first [MS]Walk was overwhelmed by the amount of support.
I have been in three communities and an active member of the
Society in each. It is good to be around people who understand.
are not required to be a Society member in
order to take part these opportunities, but MS
Society members can count on receiving advance
emailed and sometimes mailed notice about
upcoming events. A membership form with
return envelope is included in this newsletter.
Please renew your membership or join the MS
Society today.
The Society is the central body which unites us in the hope of finding a
cure and meanwhile offering help and services to sustain a good quality of life”
BC & Yukon Division Office
info.bc@mssociety.ca
T: (604) 689-3144 or
1-800-268-7582 or
1-866-991-0577 (YK)
Central Island Chapter
info.centralisland@mssociety.ca
T: (250) 722-2214
Fraser Valley Chapter
info.fraservalley@mssociety.ca
T: 1-877-303-7122
Kamloops and Area Chapter
info.kamloops@mssociety.ca
T: (250) 314-0773 or
1-888-304-6622
You will find a membership
form and postage paid
return envelope tucked
into this newsletter for
your use. Membership is
$10 per person.
06
SAT
SAVE
THE DATE
April 6, 2013
Taking Charge
of Wellness
2013 Education
Conference
Updates and information will be
provided via enews and newsletters.
Julie Baldock, Chair, Nanaimo Self Help Group.
Lower Mainland Chapter
info.bc@mssociety.ca
T: (604) 689-3144 or
1-800-268-7582
North Vancouver Island Chapter
judy.spencer@mssociety.ca
or cherie.kamenz@mssociety.ca
T: (250) 339-0819 or
1-877-339-0819
Okanagan Chapter
info.okanagan@mssociety.ca
T: (250) 762-5850
Prince George Chapter
info.princegeorge@mssociety.ca
T: (250) 564-7074
Is the membership form missing? Please
contact us by phone, e-mail, or in person
at any MS Society office to renew your
membership or join for the first time.
South Okanagan/Similkameen
Chapter
info.penticton@mssociety.ca
T: (250) 493-6564
South Vancouver Island Chapter
info.victoria@mssociety.ca
T: (250) 388-6496 or
1-800-665-5788
West Kootenay Chapter
info.westkootenay@mssociety.ca
T: (250) 229-4994 or
1-866-352-3997
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MS Hope MS Heroes | Fall/Winter 2012

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MS Hope MS Heroes | Fall/Winter 2012
SEGAL FAMILY LEADS THE WAY TO ENDMS
Mrs. Rosalie Segal, David Poole, Senior Vice-President Scotiabank, British Columbia and Yukon Region and
Chair of the endMS campaign cabinet in BC and Yukon with Mary-Beth Poole. Photos by Nelson Agustin.
Joe and Rosalie Segal opened their home to 55
friends and colleagues on September 12, 2012
in support of the MS Society of Canada’s 5-year
endMS campaign. The campaign was initiated
with the goal of raising $60 million. Funds raised
have made possible the creation of the endMS
Research and Training Network.
Created with the goal of accelerating discovery in
the field of MS in Canada by attracting, training,
and retaining trainees and researchers who will
commit their careers to further discovery in this
field, the endMS campiagn is meant to expand
and enhance opportunities to conduct MS
research in Canada.
You may qualify for assistance
through the Equipment
Provision Program.
Contact us at 1-800-268-7582,
1-866-991-0577 (YK) or visit
mssociety.ca/bc/epp.htm
Dear Sonja,
Coordinator,
Equipment Provision Program,
When the broken motor on my
old scooter made it irreparable,
the Equipment Provision Program
acknowledged the importance of
my mobility and made my needs a
priority. Through the expert advice
of an occupational therapist and the
financial generosity of the MS Society,
I now have a more stable, 4-wheel
electric scooter that can also fit onto
the bus.
The scooter greatly improves my
independence, and I know that I
can rely on it anytime I need to go
out. Things as simple as going to buy
groceries I wouldn’t be able to do
without my new scooter.
–Gerry, MS Self Help Group
Leader, North Vancouver, BC
“All of us working to
end MS are involved because we
know someone affected by MS.
Let us be grateful the MS Society
is helping them.”
Joseph Segal
Speaking to the gathering, Dr. Helen Tremlett
attested to the effectiveness of the endMS
Research and Training Network. Dr. Tremlett has
built a team of 17 young and vibrant men and
women. “My team focuses on issues affecting
people with MS today, from pregnancy and MS
to the impact of having a parent with MS on
the child. We are also developing better ways to
manage MS through improved use of medication
PAYING IT FORWARD: LAW FOUNDATION OF BC HELPS MAKE
MS SOCIETY ADVOCACY PROGRAM POSSIBLE by Marissa Ho
The Multiple Sclerosis Society’s Volunteer Legal
Advocacy Program (VLAP) assists people affected
by MS in BC and Yukon with advocacy and legal
challenges. A range of services and support are
provided through the help of lay volunteers
and lawyers who provide pro-bono legal advice
or representation. The program was created in
response to a growing need, but required financial
support to establish itself and grow. That is where
the Law Foundation of British Columbia came in.
Since it first began providing free legal services
to clients in 2001, VLAP has secured steadfast
funding from the Law Foundation. The non-profit
Law Foundation receives the interest on funds
held in lawyers’ pooled trust accounts, and then
distributes these funds as grants in the areas of
legal education, research, aid, reform, and law
libraries.
Wayne Robertson, Executive Director of the Law
Foundation of BC, explains that “VLAP, under the
Law Foundation criteria, is a part of legal aid, and
our legal aid mandate is to help people who need
legal assistance in circumstances where they can’t
afford to pay for a lawyer. People with MS are
often in that category, so helping people in those
circumstances was seen by our governors as
important and clearly fit within our mandate.”
Substantial cuts to legal aid in 2002 resulted in
the Legal Services Society no longer being able
to provide programs that helped people with
Yves Savioe, President and CEO, MS Society of
Canada with host and endMS Network supporter
Joseph Segal.
by identifying those who respond well to the
MS drugs and those who do not. I am proud to
say our findings have and will effect change;
changing the way MS is viewed, changing clinical
practice, creating a more personalized approach
to the medical care of those affected by MS and
ultimately improving the quality of life of those
with MS.”
The Segals led the way in 2007 by hosting the first
fundraising dinner in the support of the endMS
campaign in BC. With their gracious patronage,
the MS Society introduced and garnered support
for the endMS campaign goals. To date, over
$1 million has been raised by the two dinners
which bracket the start and last stages of the
tremendous 5-year effort. Mr. Segal commented
“All of us working to end MS are involved because
we know someone affected by MS. Let us be
grateful the MS Society is helping them.”
To learn more about the endMS network visit
endMS.ca or contact Brenda Jebsen, Director of
Leadership Giving at Brenda.jebsen@mssociety.ca,
604-602-3207, toll-free 1-800-268-7582. In Yukon
1-866-991-0577.
poverty law issues.
“Since then, a significant amount of responsibility
has fallen on the Law Foundation for poverty law
type issues. Poverty law, which [involves] things
like welfare and disability claims, employment law,
and housing issues, accounts for almost half of the
programs that are funded.”
The Law Foundation makes it a priority to
support the people of the groups that it funds.
Professional development sessions, a roundtable
for the executive directors of all the groups that
are funded, and conferences for supervising
lawyers—private bar lawyers who oversee the
work of poverty law advocate who are not legally
trained—are just a few of the ways in which the
Law Foundation does this.
Law Foundation support combined with
fundraising by the MS Society has helped expand
availability of VLAP to all communities in BC
and Yukon. For more information or to request
assistance visit mssociety.ca/bc/vlap.htm or
contact Catherine Connell, VLAP Coordinator at
604-689-3144 toll-free 1-800-268-7582. In Yukon
toll-free 1-866-991-0577.

CCSVI MS TREATMENT TRIAL LED BY BRITISH COLUMBIA
Researchers at the UBC Hospital MS Clinic
and Clinical Trials group are leading a new
national CCSVI treatment study called Phase I/II
Interventional Clinical Trial of Balloon Venoplasty
for CCSVI (Chronic Cerebrospinal Venous
Insufficiency) in Multiple Sclerosis patients. The
study is funded by Canadian Institutes of Health
Research (CIHR), with support from the provinces
of British Columbia and Quebec as well as the MS
Society of Canada.
Currently the study has two trial sites—one in
Montreal, Quebec and one in Vancouver, British
Columbia, but the team hopes to establish
additional sites in Winnipeg and Quebec City.
About the trial:
• After November 1, 2012, patients can be
recruited through the UBC Hospital MS Clinic in
Vancouver, BC and the MS Clinic, Campus Notre-
Dame du Centre hospitalier de l’Université de
Montréal (CHUM) in Montreal, Quebec.
DETERMINING MS RESEARCH PRIORITIES
Researcher Elaine Kingwell with Sylvia Leonard
national Vice President of Client Services MS Society.
People affected by multiple sclerosis, donors,
top fundraisers, young researchers, clinicians and
MS Society staff from communities across BC
and Yukon gathered to participate in a day-long
discussion about research priorities. The group
met in Richmond, BC on Saturday, October 27.
The feedback provided by the 22 participants will
contribute to decision-making about how the MS
Society hopes to determine research priorities for
the next 10 years.
The discussion was facilitated by national Vice
President of Research, Karen Lee and national
• This study is multidisciplinary involving
neurologists, vascular radiologists, MRI
specialists, cardiologists and ethicists at both
trial locations.
• Stringent safety protocols are in place,
including an independent data safety monitory
board, which would look at the ethics of
continuing the study if it were not in the best
interests of patients.
• The goals of the study are to determine
the safety and efficacy of treating CCSVI as an
MS strategy. It will also consider quality of life
impacts.
• The research team will enroll 100 subjects.
Patients will be randomized to receive
venoplasty (interventional radiology treatment
using a balloon, not stent) treatment or a sham
treatment and cross over to the other treatment
at year one, so all patients will receive the
venoplasty at some point.
HAVE YOU HAD A CCSVI PROCEDURE? CONSIDER THE BC CCSVI REGISTRY
In December 2011, British Columbia launched
a comprehensive CCSVI (chronic cerebrospinal
venous insufficiency) registry. This program,
developed by the UBC Hospital MS Clinic at
Vancouver Coastal Health is a province-wide
service, and is supported by $700,000 in funding
from the Ministry of Health.
The goal of the Registry is to better understand
the impact–both positive and negative–of
interventional venous treatment, and help
develop best practices care-related protocols for
patients who have had a CCSVI procedure(s).
CCSVI treatment is not available in Canada, but
many patients have been seeking the procedure
elsewhere and returning to BC without preplanned
follow-up or clear instructions for care.
The BC CCSVI Registry will be an important tool
to determine the patient perspective of outcome
(both positive and negative), the physician
perspective of outcome, and any safety concerns.
This information will aid in the development
of treatment guideline for ongoing care after
returning to BC, and in determining the potential
risks to subjects who participate in future clinical
Karen Lee, national Vice President of Research, MS
Society with Sharon Farrish, Director, Client Services,
BC & Yukon Division and John Folka, Chair, BC &
Yukon Division board of directors.
Vice President of Client Services, Sylvia Leonard.
Explained Karen Lee, “It is the first time in the
history of the organization, but certainly not the
last time, that the MS Society has sought the
opinions of non-researchers into what research
means to them and which areas of research we
should direct money that is raised by the Society.”
At the conclusion of the day, a collective desire
to focus on finding the cause and a cure for MS
was confirmed. Research about lifestyle measures,
such as exercise and diet that can be incorporated
into treatment plans, also emerged as a priority.
trials in Canada.
The Registry operates on a voluntary basis.
Patients who enroll will be followed for three
years via four telephone interview surveys. These
surveys ask questions about the patients’ recent
CCSVI procedure, their health, their activities, and
their MS. They may be asked to provide medical
records and /or a detailed medical history about
their MS.
All data will be de-identified to protect privacy.
Only aggregated and de-identified data from the
Registry will be used in analyses, and at certain
points within the three year period, findings will
be made public.
If you are interested in participating in this
voluntary Registry please call toll-free 1-800-
668-2291 or send an email to bc_ccsvi.registry@
ubc.ca, and you will be contacted by a registry
coordinator. The registry is overseen by Dr.
Anthony Traboulsee, Director of the UBC Hospital
MS Clinic and Dr. Dessa Sadovnick ,Ph.D., professor
of Medical Genetics and Neurology at UBC and
director of endMS Western Pacific Regional
Research Training Centre.
• Patients must be a resident of the province
of a study trial site. Currently, out-of-province
patients are not eligible for enrolment, but the
study team is looking at expanding trial sites
to other areas within Canada that have the
necessary facilities and expertise.
• The hope is that this study will provide
evidence that can help concretely move
forward the discussion on CCSVI in terms of
how it relates to MS in terms of cause and
effect, as well as potential treatment.
For enrollment information in British Columbia,
please visit the Vancouver Coastal Health Research
website at vchri.ca and click on the CCSVI button
on the home page. You will find information
about this trial and an email contact. You can also
find information about the BC provincial CCSVI
Registry.
DR. ANTHONY TRABOULSEE
Appointed as Multiple Sclerosis
Society of Canada Research Chair at
the University of British Columbia.
THE MS INVESTIGATORS
A Ph.D. student
at UBC, Neda
RazazRahmati
is exploring the
impact of having
a parent with
MS on the child,
using novel
research, linking
health and
education-related data from across BC,
and then investigating the variations
in development and the psychosocial
aspects of children’s lives that might
be affected by having a parent with
MS. The goal of study is to better
understand the pathways to healthy
child developmental outcomes, and to
provide insight on appropriate support
strategies for families affected by MS.
Learn more about MS research
at mssociety.ca/research
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MS Hope MS Heroes | Fall/Winter 2012

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MS Hope MS Heroes | Fall/Winter 2012
A&W CRUISIN’ FOR A CAUSE RAISES OVER $1.25 MILLION
“When our partnership with
A&W began four years ago,
we had no idea how much
Cruisin’ for a Cause would
grow, or how much impact it
would have in communities
across the country. This
year, over 750 A&W restaurants teamed up with
us to make this day a success, and help us raise
awareness and funds on behalf of Canadians
living with multiple sclerosis ,” said Yves Savoie,
President and CEO, MS Society of Canada.
“Thank you to the entire A&W family for their
commitment to further MS research and to help
support those touched by MS.”
“The ongoing enthusiasm and commitment to
this very important cause has been outstanding,”
said Paul Hollands, President and CEO, A&W Food
Services of Canada.
A&W restaurants across Canada helped raise
funds through the sale of cut-outs, customer
contributions and donations of $1 from every
Teen Burger® sold on August 23, 2012.
In total, Cruisin’ for a Cause Day has raised more
than $3.3 million over the past four years to help
end MS in communities across the country.
(Clockwise from top) Cyndi Ternovoy of the MS
Society with Brad, the manager of the main street
A&W in Penticton, the hardworking restaurant staff
and Alan Gee from SunFM radio. Cyndi summed
up the day, “what a great time!” ; A&W staff at the
Waterfront station in Vancouver invited people to
spin the wheel for a chance to win some Great Root
Bear goodies; Members of Yukon MS Self-Help Group
with some of the terrific staff at the Whitehorse A&W.
GOLFERS TAKE UP THE MS 100 HOLE CHALLENGE
When Ray Murrell set out to conquer the Multiple
Sclerosis Society’s 100 Hole Golf Challenge in
September, the motivation that got him through
the day came from Patricia, his wife, and his desire
to find a cure for the disease that has affected her
for almost 15 years.
A recent golf enthusiast, Murrell decided in
2011 to combine his passion for the course
with fundraising for a cause with which he felt
personally connected. “It was quite nerve-racking
at first. The idea of playing five and a half rounds
in a row was a little bit daunting, but really it was
a lot of fun. It was a lot less physically strenuous
than I had thought.”
Ray was joined by 22 others in this unique event
where participants took over the 72 par Canal
Course at Northview Golf and Country Club in
Surrey, BC. MS golfers enjoyed 7,100 yards of
serene golf with wide fairways and undulating
greens from dawn to dusk. Funds raised support
the dual mission of MS Society to be a leader in
finding a cure for multiple sclerosis and enabling
people affected by MS to enhance their quality
of life. The event has raised over 1 million dollars
since it started in 1996.
CYCLE TO END MS
diymsfundraising.ca
“I remember when I was about 10-11 years old,
my uncle started to walk with a cane. Later, he
started to occasionally use a wheelchair. As the
years passed by, I witnessed his condition slowly
®
®
To get involved in the MS 100 Hole Golf Challenge
as a player or event sponsor, contact Eilesha
Hall, event coordinator at 604-602-3200 or
Eilesha.Hall@mssociety.ca. More information at
msgolfchallenge.ca.
(Left) Brad Peters & Dan MacAdams. Photo by Jason Brawn. (Right) Ray Murrel. Photo by Mark Flexhaug.
deteriorate…through all of it, he has found the
strength to remain cheerful and optimistic. I
have always respected him tremendously for
that,” explained Zachary Nevin. Zachary and
good friends Christopher Schrader and Adrian
Odio Cortes took a stand against MS.The three
cycled across Canada to raise funds in support
of MS research. The trio, with a small support
team, cycled an average 200 km a day to cross
the Rocky Mountains, go through the Prairies
then over the Canadian Shield, and finally into
the Maritimes riding 6,000 km in total. They
raised over $32,000.
Photo by Katie Lapi.

Lace up
for someone
you love!
mswalks.ca
GIVE HOPE! IBEW GOLFS TO END MS ENDMS RUNNERS
Thank you to the “Give
Hope” youth driven
fundraising club. This
summer they raised
$375 and sent us this
note, “We hope this
small contribution
from our charity car
wash will go towards
the programs/services you provide
to individuals and families affected by MS.”
SEVEN MS BIKE TOURS IN 2013
LACE UP FOR 2013 SCOTIABANK MS WALK IN YOUR COMMUNITY
Photo by Katie Lapi.
IBEW local 258 organized an excellent golf
tournament to raise $8500 in support of the MS
Society. Paula Springman, Director of Development
for the MS Society was delighted to attend
the dinner with IBEW
Business
Manager,
Dan Klassen
so she could
say a personal
thank you to
IBEW golfers and
volunteers.
Sunday, April 7
Powell River
Sunday, April 14
Comox
Duncan
Langley
North Shore
Richmond
Victoria
White Rock
Sunday, April 28
Abbotsford
Surrey
Trail
Tri-Cities
Vancouver
Online registration opens mid-November at mswalks.ca
Plan for the best summer ever!
Registration for the MS Bike Tours
begins mid-November at msbiketours.
ca. Ride in your community or make it a
destination weekend in beautiful BC.
NEW! Squamish Mountain Bike Challenge date to be announced
Fraser Valley Grape Escape June 1 & 2
Cowichan Valley Grape Escape July 20 & 21
West Kootenay Glacier Challenge August 17 & 18
Okanagan Grape Escape September 8 & 9
Kamloops Thompson River Ride September 22
Vancouver Scenic City September 22
Sunday, May 5
Chilliwack
Cranbrook
Penticton
Sunday, May 12
Port McNeil
Sunday, May 26
Kamloops
Nelson
Sunday June 9
Hope
Prince George
Whitehorse
On October 7, over 11,000 runners took part in
the Goodlife Fitness Marathon
in the beautiful city of Victoria.
The MS Society, South
Vancouver Island was one of
the lucky charities chosen to
benefit through the event’s
charity pledge program.
To make it exciting, a new
running team was created,
the EndMS Runners. Led
by Team Capitan, Daniel
Either, the team grew to 31
members and raised a total of
just over $14,000!
Dates to be announced
Kelowna
Nanaimo
Port Alberni
Register and organize your TeamMS early to enjoy fun contests and prizes leading up to the
Scotiabank MS Walk in your community.
*Dates are subject to change. Find the most up to date information at mswalks.ca.
(Left) The backdrop says it all. Gorgeous country,
great friends and award winning wine make the
2-day Okanagan Grape Escape MS Bike Tour an ideal
weekend getaway. Photo by Don Pidgeon.
(Above) West Kootenay Glacier Challenge MS Bike
Tour a fantastic time. Riders enjoyed great scenery and
terrain during the 2-day tour in to raise over $70,000.
Photo by BeardedMan Photography.
Learn more at teamms.ca.
Year after year, 1000s of participants take the
TeamMS challenge to walk, run, cycle or golf on
behalf of the MS Society of Canada. Bringing
communities and corporations together, the
TeamMS experience motivates, inspires, and
challenges participants to achieve their goals
while helping to end MS.
Groups of 4 or more, including one Team Captain,
qualify to form a team. Contact your local MS
Society office to find out more about registering
or joining TeamMS, or Caitlin McLeod and she
will put you in touch with the TeamMS resource
person in your community. Caitlin.Mcleod@
mssociety.ca , toll-free 1-800-268-7582, in Yukon
toll-free 1-866-991-0577 or 604-689-3144.
With specialized TeamMS staff, resources, tips,
training and support, you will receive the best in
service to guide your team to success!
TeamMS Desperate Housewives of Kelowna
make teamwork fun! Photo by Don Pidgeon.
Daniel Ethier.
Photo by Anne-
Marie Rochon.
7
MS Hope MS Heroes | Fall/Winter 2012

8
MS Hope MS Heroes | Fall/Winter 2012
BC & YUKON ROUNDUP
Cranbrook—Connecting Caregivers
On Wednesday, October 17, people providing
care for loved ones living with MS were invited
to a session just for caregivers. Debbie Irwin,
Community Services Coordinator facilitated
discussion about self-care for caregivers and how
to avoid burnout. The MS Society is looking at
caregivers’ needs in the East Kootenays and is
checking for interest in developing a caregivers’
self-help group in the Cranbrook area. For more
information contact Debbie Irwin at 1-800-268-
7582 or debbie.irwin@mssociety.ca.
Cranbrook—Living Well with Multiple Sclerosis
On Saturday, October 20, Sheila Marshall, RPT, BSR
– Rehab Med PT/OT was the featured presenter
on “Exercise and MS.” Sheila talked about the
importance of exercise and keeping active;
overcoming barriers to exercise and activity;
energy conservation and balancing your day;
and the role of occupational therapists in helping
make assessments for adaptive equipment and
housing modifications. Debbie Irwin, MS Society
Community Services Coordinator organized the
session and was pleased to connect with people
afterwards. Debbie can be reached at 1-800-268-
7582 or debbie.irwin@mssociety.ca.
Kimberley—MS Self-Help
On Thursday, October 18, people living with MS
in the Kimberley area convened to talk about
needs and what they would be looking for in an
MS support group. For more information about
organizing self-help in the Kimberly area, contact
Debbie Irwin, Community Services Coordinator at
1-800-268-7582 or debbie.irwin@mssociety.ca.
Creston—Cognition and MS
On Friday, October 19, people affected by MS
took part in a session on how cognitive functions
are impacted by MS. Debbie Irwin presented
an overview of MS Society client services and
relevant resources. The Creston MS Self-Help
Group generously provided a pizza dinner before
the session began. The event was held at the
Creston and District Public Library. For more
information contact Debbie Irwin at 1-800-268-
7582 or debbie.irwin@mssociety.ca
Powell River—Living Well with Multiple
Sclerosis
On Wednesday
September 26,
Debbie Irwin
presented a session
on cognition and
MS, which was
co-facilitated by
occupational
therapist Shelley
Armitage. It was an
excellent session
on exercise and
MS, including an
opportunity for
participants to learn
and practice some
important stretches
for people with
MS. Debbie also held a session for health care
professionals and met with clients individually
who were in need of support.
ARE YOU A MEMBER?
Annual membership $10
Become a member today!
1-800-268-7582 (BC)
1-866-991-0577 (Yukon)
Lina Vallee, Powell River SHG
facilitator, her mother Pia
Vallee, and Kathy Dube.
Fraser Valley
Abbotsford—Surviving MS
Guest speaker Dr. Donna Paproski, a registered
psychologist, addressed several topics including
coping with loss, fatigue management, and
maintaining resiliency. The event took place
Tuesday, September 25.
Chilliwack—Self-Advocacy
A common concern raised by people living with a
chronic disease, or who are dealing with disability,
is ensuring that their voice and wishes are heard
when they interact with organizations and
professionals. A workshop presented by the MS
Society’s Volunteer Legal Advocacy Program on
Saturday, October 20 to address these concerns.
Information about wills, power of attorney or
representation agreements was addressed by
lawyer Timothy Grier. Ilena Candiani, an advocate
with the Abbotsford Community Legal Advocacy
Centre talked about personal strategies and skills
to ensure effective self-advocacy when dealing
with professionals or organizations.
For information about education events in the
Fraser Valley area contact Arlene Onderwater,
Community Service Coordinator at Arlene.
onderwater@mssociety.ca or toll-free 1-877-303-
7122. Learn more about the VLAP program at
mssociety.ca/bc/vlap.htm
Lower Mainland
North Vancouver—MS and Pain Management
A presentation on MS and pain management
was held on Saturday, November 3. Dr. Virginia
Devonshire, Neurologist and Assistant Clinical
Professor, UBC and Patrick Myers, Ph.D. , registered
psychologist, were the featured speakers to the
capacity audience.
Richmond—MS Research Update
On Sunday September 30, 2012 over fifty people
learned about recent developments in MS
research. Dr. Helen Tremlett, Ph.D., and members
of her research group from UBC, presented
updates and answered questions.
Burnaby—Newly Diagnosed
On Saturday October 20, 2012, people recently
diagnosed with MS and those in their support
network took part in a day-long education
session. Speakers and resource people included a
neurologist, a psychologist and a panel of people
who are living well with MS.
For information about education events in
the Lower Mainland contact Stacey Bradshaw,
Community Services and Events Coordinator
at 604-689-3144, 1-800-268-7582 or info.bc@
mssociety.ca
Kamloops and Area—Blazers Hockey
The Kamloops Blazers hockey game against the
Portland Winterhawks is a hot ticket! The chapter’s
fall family event scheduled for Friday, November
16 was filled a month before the game. A waitlist
has been started in case tickets become available
closer to game night. Cyndi Lion, Community
Services Coordinator will be on site to welcome
everyone. Please contact Cyndi at 250-314-0773
or cyndi.lion@mssociety.ca to be added to the
waitlist for this event, or for general info about our
family events.
Living Well with MS—Optimizing Daily
Nutrition
On Thursday, October 11, Rhonda Eden,
Registered Holistic Nutritionist provided
information about the role of carbohydrates,
protein, and fat in our daily diet. She talked about
portion sizes, label reading and provided tips on
grocery shopping and easy cooking ideas.
For information about education event in
Kamloops and area, contact Cyndi Lion at 250-
314-0773 or Cyndi.Lion@mssociety.ca .
South Vancouver Island
Victoria—Mindfulness and MS
On Saturday, November 3, Linda O’Connor
facilitated a half-day session applying the “Hands
to Heart” system which was created to share the
significance of self-care and the importance of
balance in our lives.
Victoria—Byron Katie: Self Esteem
On Tuesday, November 13, Bonny Pashak,
Manager of Client Services will facilitate a
discussion to introduce the theory and technique
behind the work of Byron Katie. The session is
meant to help participants boost and cultivate
self-esteem and to “love what is.”
Victoria—Advanced Care Planning
Friday, November 16. Facilitated by D. Dompierre,
RN. If you were incapable of speaking for yourself,
who you would like to speak for you and what
health care decisions you would want them to
make on your behalf? Advance care planning
is a process of reflection and communication, a
time for you to reflect on your values and wishes,
and to let others know your future health and
personal care preferences. Recent changes in
legislation mean that a lawyer is not necessarily
involved in creating this plan. Participants will
be provided with a new resource “MY VOICE
expressing my wishes for future health care
treatment.”
Victoria—Care Partners Support Group
On Wednesday, November 21, Barb Small, Master
of Counseling and Program Coordinator from
the Family Caregiver Network Society, will speak
about the complex emotions involved when your
loved one moves from living at home to a facility.
Barb will present tips and information to help
navigate this transition. This session is open only
to care providers/caregivers.
To RSVP for these events or for information about
education events in South Vancouver Island
please contact the chapter office at 250-388-6496
or info.victoria@mssociety.ca.
Hope Heroes Fall/Winter 2012
Editor Suzanne Jay • Contributors Anne-Marie Rochon, BeardedMan Photography, Brenda Jebsen, Cyndi Ternovoy,
Debbie Irwin, Don Pidgeon, Jason Brawn , Julie Baldock, Kent Wong, Marissa Ho, Mark Flexhaug, Michelle Eisner, Mike
McCue, Nelson Agustin, Sukhi Tomana, Trina Radcliffe, and Zara Abdulla • Cover Photo The Allen family photographed by
Mike McCue • Cover Design Katie Lapi • Design Nelson Agustín
Published 3 times a year, MS Hope MS Heroes is intended to provide news and information to people living with MS, their families, caregivers,
medical professionals and other stakeholders. Information/opinions contained in this newsletter are obtained from sources believed to be
reliable, but their accuracy cannot be guaranteed. The MS Society does not approve, endorse or recommend specific products or services and
respects an individual’s right to make their own health management decisions. However, we can provide information to assist people in their
decision process. For specific, personalized information, please consult your physician or other health care professional.
MS Society of Canada • BC & Yukon Division • 1501-4330 Kingsway, Burnaby BC V5H 4G7
Ph. 1-800-268-7582 (BC) 1-866-991-0577 (Yukon) • email: info.bc@mssociety.ca •
www.mssociety.ca • Charitable Registration # 10774 6174 RR0002
If you are receiving a copy of MS Hope MS Heroes for the first time – it is because you have been identified as one of our MS heroes who has made a real difference in the fight to end MS. As
a member, donor, sponsor, volunteer, event participant, or researcher – you are part of our world - a world that wants to end MS. If you would prefer to receive this newsletter as an e-mail – or
simply wish to be removed from our mailing list – please contact us at 1-800-268-7582 (BC) 1-866-991-0577 (Yukon) or info.bc@mssociety.ca. Thanks for your support.