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: 416.922.7538info@mssociety.ca mssociety.ca/mscanadaCharitable registration no. 10774 6174 RR0001

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President and chief executive officer: Yves SavoieEditor-in-chief: Tiffany Regaudie

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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

—ALBERTA 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

actACCESS TO ALBERTA SERVICES

The Way Forward

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

http://www.atlasofms.orghttp://bit.ly/1gJHdEp

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 CURREN

T

RESOURCE GAP

Better MStreatments

http://www.cdrd.ca

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

http://www.mssociety.ca/researchsummaries

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.

http://www.mssociety.ca/physicalactivity

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.

http://www.someonelikeme.cahttps://twitter.com/donjuanglhttp://instagram.com/juanderfulworld#http://someonelikeme.ca/author/lioncoeur/

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.

http://www.msanswers.ca

MS CANADA Spring-Summer 20141 4

Access to services in Alberta“The Way Forward” initiative reduces barriers to care and supports for Albertans with MS

If you live with multiple sclerosis or know

someone who does, you know that symptoms

can vary greatly from one person to another.

The ever-changing nature of relapsing-remitting

MS classifies it as an episodic illness, resulting

in changes to personal health care needs at

different times. For those with progressive

forms of MS, an adaptable health care and

social support system is crucial to delivering

services unique to their needs.

Albertans with MS have identified a number

of barriers to living life to its fullest, including

difficulty accessing the right services and sup-

ports, particularly in rural areas. Barriers extend

beyond the health sector to include issues of

income supports, social services and housing.

To address these complex challenges, the

MS Society of Canada in Alberta has been working

with community and government partners to

create a better way to access services.

In November 2013, the Government of Alberta

announced an exciting initiative to address the

needs of all Albertans living with MS. “The Way

Forward: Alberta’s Multiple Sclerosis Partnership”

is a collaborative approach consisting of nine part-

ners, including three Alberta government ministries,

two universities, three MS clinics and the MS Society.

Each partner is fully committed to achieving

the shared vision of “The Way Forward”: that

Albertans affected by MS have access to a co-

ordinated, continuous and comprehensive system

of care, services and supports that empowers

them to have the best quality of life possible.

What ‘The Way Forward’ means to Albertans living with MS is a promise that necessary wellness services will be easier to access, no matter where you live in the province. The initiative looks to connect the dots and streamline existing services to make them more effective. People in the community will work together to improve quality of life for people with MS. — JULIA NIMILOWICH, CHAIR OF EDMONTON BOARD OF DIRECTORS WHO LIVES WITH MS

Visit bit.ly/1dR6ngA for more information.

http://bit.ly/1dR6ngA

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

http://www.mssociety.ca

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.

http://www.mssociety.ca/advocacy

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.

http://www.atlasofms.orghttp://www.mssociety.ca/mscanada

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.

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