spring-summer 2014 - ms society of canada · pdf file · 2015-12-22by priya...
TRANSCRIPT
Spring-Summer 2014
FEATURE STORY
The Caucasian Question:
Multiple sclerosis in
immigrant populations
by Priya Sankaran
LIVING WELL
Exercising
with MS
FASTER PATHS FOR
MS RESEARCHTranslational
research
TAKING ACTION
Becoming an
accessibility
advocate
O U R M I S S I O N : To be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life.
MS Canada, Spring/Summer 2014
Multiple Sclerosis Society of Canada500, 250 Dundas St W, Toronto, ON M5T 2Z51-866-922-6065 F: [email protected] mssociety.ca/mscanadaCharitable registration no. 10774 6174 RR0001
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Guest contributor:
Priya Sankaran
Priya Sankaran is a radio reporter with CBC News Toronto.
Priya was born in Hamburg, Germany to Indian parents, but she came to call Toronto home after attending Ryerson University’s Radio and Television
Arts program. She was diagnosed with multiple
sclerosis in 2007, and she produced a CBC Radio documentary
about her experience with MS called “The
White Man’s Disease.”
Spring-Summer 2014
—ONTARIO EDITION—
FE ATURE
The Caucasian Question:
Multiple sclerosis in immigrant populations
by Priya Sankaran
4
informRESE ARCH
Translational research
7LIVING WELL
Exercising with MS
9
relateMY MS JOURNE Y
Diagnosed as a student
by Juan Garrido
11PR AC TIC AL M AT TERS
Driving with MS
13
actEMPLOYMENT Q&A
National Education Series
14
MS RESE ARCH PARTNERS
15 years of research milestones
15TAKING AC TION
Becoming an accessibility advocate
16
Message from Yves
18Notice of AGM
19
MS CANADA Spring-Summer 20144
The Caucasian QuestionMultiple sclerosis in immigrant populationsBY PRIYA SANK AR AN
Multiple sclerosis is a condition I’m not
supposed to have, according to the
medical information available at the time
of my diagnosis.
As an immigrant to Canada from India, a country
blessed with sunshine and plenty of vitamin D
year round, my ethnicity doesn’t fit the traditional
profile of MS as a Caucasian disease. As a jour-
nalist, I can’t make the facts add up in my mind.
Initially, I didn’t believe my diagnosis was right.
When I found out I had MS, I felt very alone
despite friends, family and colleagues who
offered me support. Within a few days of my
diagnosis, I found myself in the waiting area of
the MS clinic at St. Michael’s Hospital in Toronto.
Around me were other MS patients — mostly
women, mostly Caucasian. The only other
women of colour in the room were my mother
and sister, who were there for support, and
some of the clinic staff.
Skin colour, or race, has always been a
factor in my life growing up in Ottawa as an
immigrant. From a young age, I’ve sometimes
been ostracized because of the shade of my
skin. I’ve learned to cope and remain confident,
no matter how much people’s words have hurt
me. I’m used to being the only “brown” person
in a room. After my diagnosis, however, it was
difficult to digest the new form of isolation
I felt as a person of colour with MS. I didn’t see
myself in the waiting room literature on the
clinic’s periodical shelves. I couldn’t understand
why MS chose me. My defiance was met with
After my diagnosis, it was difficult to digest the new form of isolation I felt as a person of colour with MS. I didn’t
see myself in the waiting room literature on the clinic’s periodical shelves.
5
sympathy from my neurologist, who was the
first to assure me that the literature needed
updating, in addition to the statistics about MS
prevalence in the world. He was certain MS isn’t
a Caucasian-only disease.
A few months later, I travelled to India as
part of “adjusting” to my diagnosis. When I was
there, a small ad in a local newspaper drew my
attention — the local chapter of the MS Society
of India was throwing a fundraiser. This was the
first moment since talking to my neurologist in
Toronto that I could see the disease extended
beyond Caucasian communities.
At the fundraiser I saw women, close to
my age, struggling to walk. I learned about
ongoing outreach efforts to help the estimated
40,000 Indians with MS. I discovered the
crucial nature of awareness campaigns in the
country, as even the medical community in
India is largely unaware of the condition. Many
doctors in India refer to published literature
on MS that has mainly studied people from
western Caucasian countries. As a result,
policy makers and politicians in India are not
aware of the disease, and Indians with multiple
sclerosis are left with few voices advocating
for their rights.
In Canada I know of many outreach
efforts for people with MS, but these efforts
are not specific to any one ethnicity such as is
available to people with diabetes or heart dis-
ease. Data is perhaps more conclusive about
the connection between ethnicity and disease
in these areas. Still, I wonder about the lack of
available data about MS prevalence in immi-
grants like me in Canada, the United States
and Europe. Given Canada’s large and diverse
immigrant population, we have a responsibility
to make this data available.
It may well be just a matter of time. Now,
more than seven years since my diagnosis, some
of the literature has caught up to the reality I face
as a person of colour with MS. A recent study
published in Neurology1 concluded that MS,
long considered a disease of Causasian females,
has affected more African-American women in
California in recent years. A news story about
economic sanctions against Iran2 revealed that
one of the affected groups was people with MS,
whose access to treatments had been cut off.
My own search for facts about MS culmin-
ated in a documentary I produced for CBC
Radio’s The Sunday Edition called “Multiple
Sclerosis: The White Man’s Disease”. I interviewed
Dr. Lehka Pandit, an MS neurologist from
southern India who has been working closely
with Canadian researcher Dr. Dessa Sadovnick.
1 Langer-Gould, A., Brara, S. M., Beaber, B. E., Zhang,
J. L. (2013). Incidence of multiple sclerosis in multiple
racial and ethnic group. Neurology, 80(19), 1734–1739.
www.neurology.org/content/80/19/1734
2 Dehghan. S. K. (2012, October 17). Iran sanctions
‘putting millions of lives at risk’. The Guardian.
http://www.theguardian.com/world/2012/oct/17/
iran-sanctions-lives-at-risk
Soon after her diagnosis, Priya travelled to India to find community and adjust to her diagnosis.
MS CANADA Spring-Summer 20146
Their work focuses on genetic susceptibility
in MS. Dr. Sadovnick, based at the University
of British Columbia, is trying to find out if
rates of MS are changing in Asian and South
Asian communities in North America. Dr.
Sadovnick in Canada and Dr. Pandit in India
are sharing information in hopes to stan-
dardize the pre- and post-immigration data
they collect about genetic factors in people
of Indian descent who have MS.
My public disclosure about my MS
through my documentary has connected
me with other people of colour with MS in
Canada and the U.S. I have received letters,
emails and phone calls. I’ve arrived at
St. Michaels’ MS clinic to meet the eyes of
another non-Caucasian person with MS — for
a brief moment, we share some recognition
and smile at each other. I’ve formed friend-
ships in Toronto with non-Causasian people
with MS. Knowing I’m not alone has made
carrying this disease a little easier.
Priya Sankaran’s radio documentary “Multiple Sclerosis: The White Man’s Disease” aired on CBC’s The Sunday Edition on February 10, 2013. Visit bit.ly/1gJHdEp to listen.
Dr. Sadovnick in Canada and Dr. Pandit in India are sharing information in hopes to standardize the
pre- and post-immigration data they collect about genetic factors in people of Indian descent who have MS.
In 2013, the Multiple Sclerosis
International Federation created
the Atlas of MS Database,
an online resource for the
“epidemiology of MS and the
availability and accessibility of
resources for people with MS
at country, regional and
global levels.”
We now know that Canada has the
highest rate of MS in the world,
with 100,000 Canadians living
with the disease.
For more information, visit
atlasofms.org
7
Faster Paths for MS ResearchTranslational research
What is translational research?Translational research moves scientific discov-
eries gained in the lab through the treatment
development process. While basic science
produces the appropriate ingredients for a treat-
ment, translational research is the recipe that
generates therapies and proves they can work.
To accelerate the pace of research, the
MS Society of Canada has established a fund
with the Centre for Drug Research and Develop-
ment (CDRD), a not-for-profit drug development
centre based in Vancouver, British Columbia.
With state-of-the-art scientific facilities and
project management expertise, CDRD has the
means to take promising research discoveries
in MS and develop them into therapies that
will improve the lives of people affected by
the disease.
For more information on CDRD, visit cdrd.ca
The acceleration of MS research brings hope
to people affected by MS who are looking for
answers about their disease today.
During recent nationwide discussions between
people living with MS and researchers, it became
apparent that speeding up the pace of research
to deliver better treatments and a cure is just as
important as research itself.
We often celebrate scientific breakthroughs
that further our understanding of disease and set
the stage for the development of better treat-
ments. These breakthroughs are a result of “basic
science”, a term that refers to experiments that
reveal complex biological processes in the body.
For decades the MS Society has funded research
that has led to insights about MS and novel thera-
pies for the disease. Through our collaboration
with CDRD, we will accelerate translation of
these insights to expedite the development of
effective treatments, and ultimately a cure for MS.
The Research Continuum
Basic Science
Translational Research
Clinical Development
Research Goal
CLINICAL TRIAL PHASES CURRENT
RESOURCE GAP
Better MStreatments
MS CANADA Spring-Summer 20148
From issues to impact Translational research opens doors for advanced
scientific innovation that is often overlooked
because its development would involve another
Current issue Potential impactMy current treatment has numerous and often
severe side effects.Generate therapies that target only those cells involved
in MS, without harming healthy parts of the body.
I need to manage symptoms that are specific to my disease course.
Increase treatment options for specific symptoms such as fatigue, mobility, spasticity and pain.
I currently have relapsing-remitting MS, and I’m scared of developing a progressive form of the disease.
Increase myelin repair and nerve protecting therapies to prevent disease progression.
I currently have progressive MS, and there are no treatments for my disease.
Investigate the application of novel regenerative therapies to stop disease progression.
Research takes decades to have positive impacts on my life.
Provide researchers with the means to overcome barriers in transforming their discoveries into therapies.
research and organizations that can support
its development.
Focus on translational research is critical
to ensuring that basic knowledge generated in
the lab can find its way into the clinic.
Dr. V. Wee Yong is a professor and MS researcher at the Hotchkiss Brain Institute and departments of clinical neurosciences and oncology at the University of Calgary. To learn more about Dr. Yong’s research funded by the MS Society of Canada, visit mssociety.ca/researchsummaries
level of time and resources. A commitment to
translational research transforms questions and
doubts about multiple sclerosis into tangible
benefits that impact a person’s life.
Dr. V. Wee Yong, University of CalgaryWorking in translational research
Many exciting ideas and discoveries are made in
the laboratory. The challenge is deciding which
findings would most benefit people with MS.
Translational research helps researchers like me
build the right partnerships to move the right
discoveries through the treatment development
process.
For example, I am currently on a team
investigating minocycline, an acne treatment that
exhibits anti-inflammatory and nerve protecting
properties. We want to determine if minocycline
can stop the progression of disease in people
with early signs of MS. Although the drug is
already on the shelf, it must still undergo a new
round of clinical trials specifically for MS.
The Centre for Drug Research and Develop-
ment (CDRD) has the resources to dramatically
speed up this process in several ways. First, they
provide a team with the knowledge and technol-
ogy to test innovative discoveries in clinical trials.
Second, they build connections between my
9
Living wellExercising with MS
activity and strength training for major muscle
groups, each twice per week to achieve
fitness benefits.
This is a sampling of exercises that puts
research about fitness and MS into action, so
you can exercise in a way that works for you.
Suggested activities may be performed independ-
ently or with assistance from a physiotherapist or
fitness professional.
In the past, people with multiple sclerosis were told they should avoid exercise.
Through research, we now know fitness is a key element of the overall management of MS.
Last year, a research team led by Dr. Amy
Latimer-Cheung of Queen’s University and
Dr. Kathleen Martin Ginis of McMaster University
developed the Canadian Physical Activity
Guidelines for Adults with MS.
The guidelines, released by the Canadian
Society for Exercise Physiology, in partnership
with ParticipACTION and the MS Society of
Canada, recommend 30 minutes of aerobic
Always check with your doctor before beginning
an exercise program. He or she may have
recommendations on ways to customize your
fitness plan to suit your needs.
10 MS CANADA Spring-Summer 2014 For more on how to exercise with multiple sclerosis,
visit mssociety.ca/physicalactivity
S TATIONARY BICYCLE
Area of focus: Legs
Potential benefits: Improved endurance,
muscle strength and weight management.
Things to consider: If you have balance
or vision issues, consider a recumbent
(reclined) bicycle as opposed to an
upright bicycle.
To compensate for muscle weakness,
adjust the bicycle’s resistance.
UPPER-BODY ERG OME TER
Area of focus: Arms
Potential benefits: Improved endurance,
muscle strength and weight management
for people with limited leg mobility.
Things to consider: Engage your core
during this exercise to achieve full benefits.
To compensate for muscle weakness,
adjust the machine’s resistance.
LEG PRESS
Areas of focus: Large leg
muscles and glutes
Potential benefits: Increased
muscle strength in large muscle
groups and improved mobility.
Things to consider: Use light
weight at first– concentrate
on proper form. Bend your legs
no further than 90 degrees to
protect your lower back.
BICEP CURL
Areas of focus: Arms and hands
Potential benefits: Improved arm strength
for movement that requires pulling or lifting.
Things to consider: To perform this
exercise while seated, sit on the floor with
your legs in front of you. Wrap the band
around your feet.
SHOULDER PRESS
Areas of focus: Arms, shoulders, torso and back
Potential benefits: Improved arm strength for
movement that requires pushing or lifting.
Things to consider: Engage your core during
this exercise to achieve full benefits.
CORE
Areas of focus:
Torso, back and arms
Potential benefits: Improved
overall balance and stability.
Things to consider: Your
lower back is also part of your
core — reverse this movement
by lying on your stomach and
lifting your upper body while
your hips remain on the floor.
11
My MS journeyDiagnosed as a studentBY JUAN G ARRIDO
I didn’t know much about MS, so I had no idea
what kind of life I would lead from that point
forward. I was scared. I couldn’t feel the hand
I wrote with — what hope did I have of finishing
my degree and remaining involved in student life?
Besides telling my family and a couple
of close friends, I kept my MS hidden.
During my first relapse, I started taking
medication for my MS. My condition is now
under control, but I’m fully aware that my eye-
sight could go haywire again, or my hand could
be rendered useless because of a surprise
relapse.
With a demanding schedule, the unpredict-
ability of MS can throw a serious wrench into
my life.
My journey with MS started in June 2012
on a train home to Toronto from Quebec.
I had fallen asleep and when I woke up, I had
lost feeling in my legs. I figured I had slept in
a weird position and pinched a nerve. A few
days passed, and that feeling (or lack thereof)
travelled to my upper body. A couple of clinic
and hospital visits later, I was diagnosed with
relapsing-remitting multiple sclerosis.
QuestionsWith three years of university left, including a
part-time campus job and heavy involvement
in residence life and student government, the
diagnosis was earth shattering. My family and
My family and I didn’t know much about MS, so I had no idea what
kind of life I would lead from that point forward. I was scared.
MS CANADA Spring-Summer 201412
Coping — and sacrificesI knew that if I wanted to successfully balance
everything on my plate, I would need to take
extra care of myself. For me, stress is a major
trigger for a relapse, so stress management has
become a priority for me. I have had to scale
back on some of my academic involvement
and rethink my priorities — which is still a work
in progress.
My degree usually takes four years to
complete, but I’ve decided to take extra time
and graduate after five years.
Being an advocateAfter realizing that I could still study and
remain an active member of my community
while living with MS, I wanted to share this
knowledge with others.
So, I started telling people. I wanted to
show that MS didn’t hinder my abilities as a
student leader; instead, MS has pushed me
to follow my passions while living with it.
Through my work in residence and
student government, I’ve become an advocate
for accessibility for students with disabilities.
I use social media to spread awareness of these
issues, and I share my own story so that others
with MS know they are not alone. I believe in
building on the strong community that exists
to support people through their disease.
The futureWhen I was first diagnosed, my future seemed
scary and uncertain. But now that I have it mostly
under control, the future looks more hopeful.
I’m going to complete my Bachelor of Arts degree,
and I’m now even looking into graduate studies.
Yes, having multiple sclerosis sucks some-
times. As a university student, however, I’m
thriving and living with it one day at a time.
Juan Garrido is a student at Glendon Campus, York University in Toronto. He blogs regularly at Someonelikeme.ca, an online community for young people with MS.
Follow Juan’s journey:
@DonJuanGL
@juanderfulworld
Lioncoeur
Juan thrives as a student living with MS by advocating for himself and others with the disease.
1 3
Practical mattersDriving with MS
STEP #3After the clinical assessment, you will conduct a road test in a modified vehicle (with hand controls) with the OT and a certified driving instructor.
Access to transportation is vital to living well with multiple
sclerosis. If your MS is causing leg weakness, loss of mobility
or cognitive issues, you may be wondering how this will impact
your ability to drive. Here is a step-by-step guide to making
adaptive driving a part of your everyday life.
Driving is all about maintaining your independence. I wish accessing adaptive driving had been easier — no matter where you live, these services should be made more accessible for people who have the option to keep driving with MS. — HANS, DIAGNOSED IN 1997
STEP #1Obtain a referral to a driving rehabilitation program from your local MS clinic or your family physician. [Note: A driving rehabilitation pro- gram is considered a private service; therefore, there will be a cost for the assessment.]
STEP #2During your appointment, an occupational therapist (OT) will conduct a physical and cognitive assessment to deter-mine your ability to drive. If cognitive impairments are found and raise safety concerns, further testing may be required.
STEP #4Based on your needs, the OT will recommend several types of vehicle adapta- tions for your car. A report of your assessment with the recommendations will be sent to the Ministry of Transportation and your referring physician.
STEP #5If you are using a mobility device such as a walker or a wheelchair, you may then request a separate assessment for further vehicle modifications.
This step-by-step guide to driving with MS was adapted from MS Answers. For more practical tips on living well with MS, visit msanswers.ca
Your access to funding for car modifications may vary according to where you live.
Contact the MS Society of Canada at 1-800-268-7582 for more information.
MS CANADA Spring-Summer 20141 4
Employment Q &A National Education Series event produces video resources
Multiple sclerosis can have a profound impact on a
person’s ability to earn a living.
The unpredictable and episodic nature of MS can
often make it difficult for Canadians with MS to remain
connected to the workforce, as employment insurance
sickness benefits are not flexible enough to accommodate
relapses. Many questions may arise when investigating
systemic issues and individual rights of people with MS
looking to make decisions about their careers.
On November 16, 2013, the MS Society hosted a
webinar in Toronto on employment issues for people
affected by MS. Panelists provided advice on:
• Disclosure of MS
• Employee vs. employer rights
• Income replacement programs
• Communication to employers
• Making career decisions
Visit y2u.be/UYHm_epqvOg to access all videos from
the webinar.
As a person living with MS, I understand that every person’s symptoms are different. When you’re looking for employment, consider exactly how your symptoms and treatments affect your work — and tap into your support network of family and friends to advise you on considerations about your disease that you may take for granted. — JENNY GILKER, EMPLOYMENT INFORMATION COORDINATOR WHO LIVES WITH PRIMARY-PROGRESSIVE MS
Visit mssociety.ca/publications › Managing practical issues for more information on employment and income support. To get involved in advocating for employment rights, visit mssociety.ca/advocacy.
1 5
MS Research Partners 15 years of research milestones
This year we are recognizing 15 years
of hope through MS research funding.
Since 1999, people like Ken, Peter and
Agnes have raised more than $5 million
for world-leading Canadian MS research as part
of the Research Partners community.
Many Research Partners, like Ken, are
personally affected by multiple sclerosis. Others,
like Agnes, are simply committed to a cause they
believe in — ending MS.
All Research Partners — 300 people, founda-
tions and corporations — are funding research
that gives hope to the 100,000 Canadians living
with MS. For this, we are thankful to this unique
community and will continue to build on 15 years
of milestones so that we may soon see an end to
multiple sclerosis.
Become a Research Partner in ending MS — visit mssociety.ca or call 1-800-361-2985.
I believe researchers will find a cure for multiple sclerosis — for me, for everybody, in my lifetime. Supporting research is an expression of hope, my expression of hope. — KEN, RESEARCH PARTNER SINCE 2002
2 0 0 0 Multiple Sclerosis Scientific Research
Foundation (MSSRF) launches study to
determine whether transplanting bone
marrow stem cells in people with MS
can manage disease
2 0 04 Published study in Nature reveals
important information about the role
of viruses in the development of MS
2 0 07 University of Calgary researchers dis-
cover pregnancy-related hormone that
encourages the rebuilding of myelin
2 0 1 0 Research reveals more about the impact
of other health conditions and lifestyle
factors on quality of life of people affected
by MS
2 0 1 1 MSSRF funds a multi-centre study on
progressive forms of MS
2 0 1 2 Study points to sleep apnea as a major
contributor of fatigue in people living
with MS
2 0 1 3 MSSRF funded stem cell study from
2000 advances understanding of risky but
effective bone marrow transplantation
as a treatment for MS
BECAUSE OF YOUMS SOCIET Y-FUNDED
RESE ARCH MILES TONES
My hopes for MS research are for a cure and for prevention of MS. I hope that strides continue to be made for better treatments for people with MS. — PETER, RESEARCH PARTNER SINCE 2005
People living with multiple sclerosis need hope — and I want to help provide that. — AGNES, RESEARCH PARTNER SINCE 2004
MS CANADA Spring-Summer 201416
Taking actionBecoming an accessibility advocate
Linda McGowan, accessibility advocate
When I was diagnosed with multiple sclerosis in
1983, nobody believed I had the disease — I had
just finished running the Vancouver Marathon
four months before my diagnosis. At the time,
I was frightened by the diagnosis because I was
working with people affected by the disease as
a home care nurse. My job made me aware of
the barriers to accessibility faced by people with
MS inside their homes and out in the community,
but I had little information about adapting to
life with a disability.
When I was first diagnosed, I was told to
stop exercising, quit my job, stay at home and
prepare for life in a wheelchair. I totally ignored
this advice. Since my diagnosis, I have visited
For a full list of MS advocacy issues and details on how to take action, visit mssociety.ca/advocacy
more than 100 countries, written a book and
climbed 2,500 feet above Mount Everest base
camp — all from my wheelchair. I am an advocate
for myself and others with disabilities through
a full-time position with MVT Canadian Bus Inc.,
Vancouver’s custom transit provider for people
with disabilities.
As the consumer advocate for HandyDART,
I visit assisted living centres, MS clinics and other
places where people with MS receive disability
services. I spread awareness of the system through
public speaking engagements, newsletters and
face-to-face interactions with people who use the
services and their families. I also let people know
how they can better advocate for themselves.
I’m a believer in being “pleasantly assertive”
when advocating for yourself — don’t act angry,
I’m a believer in being ‘pleasantly assertive’ when
advocating for yourself — don’t act angry, but be firm in expressing your needs so that the outcome
you want is more likely.
Small changes, big impactsIn Vancouver, all new construction is now required to have:
For people with MS who face accessibility barriers in public buildings and inside their homes,
these small changes will lead to improved interactions with public and private space. 17
levered
door
handles
and taps
(instead
of round
knobs)
raised
outlets
lowered
light
switches
accessible
bathrooms
on a
main floor
Three ways to advocate for accessibility
1 Contact your municipality and inquire
about joining an access advisory committee.
There are often opportunities for people
with disabilities to participate in community
development, such as adding accessible
transit stops where people need them.
2 Volunteer for your favourite community
event. Most community events such as
music festivals, fundraising events and trade
shows are made accessible to people with
disabilities, and volunteers are required
for organizing accessible space and
communication with disabled participants.
3 Contact the MS Society to find out
how we can work together to educate
government representatives about barriers
to accessible space.
but be firm in expressing your needs so that the
outcome you want is more likely.
I see advocacy as a shared responsibility
between community representatives and
people with disabilities. The best advocate for
yourself is you.
Advocacy is about finding your voice and
believing that change is possible.
When you advocate for yourself or others
affected by multiple sclerosis, you’re shaping
a better community for people with chronic
illnesses and disabilities.
Canadians with MS face a multitude of
issues that can impact quality of life, but a
good place to begin advocacy efforts is with
accessibility. “Accessibility” refers to the level
of ease with which a person may access private
& public space, transportation and wellness
services such as fitness & social programs.
As many people with MS are active members
of their community, advocacy for better
accessibility is vital for removing day-to-day
barriers to living a full and productive life.
MS CANADA Spring-Summer 20141 8
Message from YvesMultiple sclerosis is a complex disease that
often calls for a reframing of the way we
examine it. MS research in what is called
“basic science” has revealed crucial informa-
tion about what happens in the body during
a relapse; as a result of this research, there
are now ten disease-modifying therapies for
relapsing-remitting MS in Canada, three of
which may be taken orally without injection.
While MS research may be celebrated for
its impact on people with relapsing-remitting
MS, there are still many gaps to be filled in our
understanding and management of progressive
MS. As the disease trajectory for progressive MS
can be more rapid than for relapsing-remitting
MS, researchers such as Dr. Peter Stys at the
University of Calgary are focusing their efforts
on understanding how and why nerve fibres are
permanently damaged in progressive MS. Many
researchers are also working to better under-
stand myelin repair, so that people with all forms
of MS have options to reverse the damage done
by the disease. Dr. Peter Stys will be a special
guest speaker at the MS Society’s Annual
General Meeting (see page 19 for more details).
To transform our growing knowledge of
MS into therapeutics that will benefit people
with MS today, we are embarking on a more
integrated approach to research funding that
will now encompass investments in translational
research. In addition to continuing to fund the
basic science in MS, we have partnered with
the Centre for Drug Research and Development
(CDRD) to invest in the steps required to transform
discoveries about MS into tangible approaches
for symptom management, to halt or slow the
progression of MS, and ultimately a cure for
the disease.
In this issue of MS Canada, we welcome
CBC reporter Priya Sankaran’s moving story about
her search for community as a person with MS
of non-Caucasian descent. While MS has long
been considered a disease that largely affects
Caucasians, new research about MS in developing
countries and newcomer populations is refram-
ing our global view of MS. Priya’s story reminds
us of the importance of a bird’s eye view of MS,
as shown by the Multiple Sclerosis International
Federation’s new Atlas of MS, which provides
data about the disease from across the globe.
Visit atlasofms.org for more information.
A note of recognition and gratitude is
extended to Biogen Idec for their support of this
edition of MS Canada through an unrestricted
educational grant. To provide more fulsome
information about MS and those who are affected
by it, we have refreshed MS Canada in content
and design. Through our new extended layout
and based on feedback from our reader survey,
we look forward to providing more content on
research and ways to live well with MS. As part of
a collaborative approach to delivering personal-
ized information about MS, some provinces such
as Ontario and Alberta will receive editions of
MS Canada that integrate national content with
articles that are specific to their regions.
Visit mssociety.ca/mscanada to share the issue with your community today.
YOU HAVE THE RIG HT TO VOTE BY PROX Y. A COPY OF THE FORM OF PROX Y IS SE T FORTH BELOW.DATED at Toronto, Ontario this 17th day of April 2014, Valerie Hussey, C.M.,Secretary
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Multiple Sclerosis Society of Canada Proxy for Annual Meeting of Members, June 14, 2014[PLEASE PRINT]
The undersigned hereby appoints Charles Ford, or failing David A.Garton, François Coupal or Valerie Hussey or (any other individual may be designated as a proxyholder) as proxyholder with power of substitution, to attend and vote for the undersigned at the Annual Meeting of members to be held Saturday, June 14, 2014 and at any adjournment or adjournments thereof and to vote and otherwise act thereat for and on behalf and in the name of the undersigned in respect of all matters which may come before the meeting in the same manner the undersigned would do if personally present thereat.
DATED this day of 2014
SIGNATURE
Surname Middle Initial First Name
Street Address
City/Town Province/Territory Postal Code
Chapter/Unit Telephone No (or Division if the Membership is held at the Division)
NOTE TO PROX Y1. The person named in this proxy intends to [check one] vote for or against the resolutions set forth in the notice
of meeting, other than the appointment of a public accountant and the election of Directors.2. The person named in this proxy intends to [check one] vote or withhold from voting in respect of the appointment
of a public accountant or the election of Directors.3. The person named in this proxy is to vote or withhold from voting in accordance with the instructions of the Member,
on any ballot that may be called for with respect to any matter to be acted on, 4. This Proxy also confers authority for the above named person to vote in his/her discretion with respect to amendments
or variations to matters identified in the notice of meetings or other matters which may properly come before the meetings or any adjournments thereof.
Please date, sign and return this proxy to the Secretary, Multiple Sclerosis Society of Canada, National Office, 250 Dundas St W, Suite 500, Toronto, ON M5T 2Z5 by Friday, June 06, 2014 at 4:00 p.m. Eastern Standard Time . Attention: Rosanne Portelance.
MULTIPLE SCLEROSIS SOCIET Y OF CANADA NOTICE OF AN ANNUAL MEETING OF MEMBERS
NOTICE IS HEREBY G IVEN that an Annual Meeting of the members of Multiple Sclerosis Society of Canada will be held at the Delta Montreal, 475 President Kennedy Avenue, Montreal, Quebec H3A 1J7, on Saturday, June 14, 2014 at 1:00 p.m. (Eastern Standard Time) for the following purposes:
i) Receiving the report of the members of the MS Society Board of Directors and the audited financial statements for the year January 1, 2013 to December 31, 2013; together with the report of the public accountant thereon;
ii) Electing members of the MS Society Board of Directors;iii) Appointing the public accountant;iv) Approving amendments to the operating by-law of the
MS Society of Canada under the Canada Not-for-Profit Corporations Act; and
v) Such further and other business as may properly be brought before the meeting.
On May 30, 2014, the audited financial statements and proposed by-law amendments will be made available on our website www.mssociety.ca\AGM2014 or by calling 1-866-922-6065 x3003 to request a copy be mailed to you.
The Board of Directors of the Society includes fourteen directors. Three positions will become vacant at the AGM. Any member wishing to nominate a candidate as a director is
invited to do so on or before Friday, June 06, 2014 at 4:00 p.m. Eastern Standard Time. Biographies of candidates standing for election will be made available on www.mssociety.ca\AGM2014 on June 11, 2014 or earlier.
Pursuant to the bylaws of the Society, there is one class of Members of the Society. Membership in the Society is available to individuals who wish to further the purposes of the Society and is administered by the Divisions and Chapters in accordance with the Membership Policy. Members attending the AGM will be confirmed in good standing and provided with voting cards as appropriate in keeping with the governance rules and regulations of the Society. A Member will be considered to be in good standing if the Member was admitted to membership at least ninety (90) days before the AGM. Existing Members may renew their membership immediately before the AGM if their membership has not been lapsed for more than one year. Members in attendance at the AGM will be required to provide valid photo identification.
Members who are unable to attend the meeting in person are requested to date and sign the form of proxy below, detach and return it to the head office of the MS Society, 250 Dundas St W, Suite 500, Toronto, ON M5T 2Z5 by Friday, June 06, 2014 at 4:00 p.m. Eastern Standard Time Attention: Rosanne Portelance.