Fall-Winter 2015

FEATURE STORYLiving fit

with MS

by Robyn Baldwin

ACTION ON MSFlexible

income supports

LIVING WELLWinter safety

toolkit

RESEARCHRisk

factors

MS Canada, Fall/Winter 2015

Multiple Sclerosis Society of CanadaSuite 500, 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 RegaudieManaging editor: Meaghan Kelly

Editorial committee & contributorsAngelica Asis, researchNick Dehod, Alberta & NWT DivisionIlana Hirt, leadership givingRebecca Horan, Manitoba DivisionJudith Kays, Atlantic DivisionJulie Kelndorfer, government relationsLisa McCoy, Ontario DivisionLee Nichols, leadership givingSylvie Rousseau, Quebec DivisionAndria Samis, programs & servicesPeter Schwarz-Lam, researchPam Seto, marketing & communications Carissa Trenton, Saskatchewan DivisionRowena Veylan, BC & Yukon Division

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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.

Fall-Winter 2015

FE ATURE

Living fit with MS

by Robyn Baldwin

4

informRESE ARCH

Risk factors

7LIVING WELL

Winter safety toolkit

9

relateMY MS JOURNEY

York Region’s WHEEL DANCE group

by Sonja Veg

11PR ACTICAL MAT TERS

Coping strategies for cognitive symptoms

13

actTHE ULTIMATE ADVENTURE CHALLENGE

Dominique Deschamps

14 FOLLOW THE LE ADER

Changing one student’s life

15ACTION ON MS

Flexible income supports

16

ONTARIO MS AMBASSADORS

18

Message from Yves

19

Visit

mssociety.ca to

see content based

on your location,

and use our new

accessibility

features.

ONTARIOEDITION

MS CANADA Fall-Winter 20154

Living fit with MSBY Robyn Baldwin

It’s 5:00 am, and I’m awake and ready for the gym.

This isn’t unusual for me; I began competing

in fitness competitions in 2009, and one of my

goals is to grace the podium at an obstacle

course race. This day, though, two of my fingers

are tingling like they’ve fallen asleep. I’ve been

training for obstacle course races with a heavy

amount of weightlifting and running, which leads

me to assume I’ve pinched a nerve during a

training session. I go to the gym nonetheless.

The numbness snakes its way through my

upper body as the day progresses—first my hand,

then my arm, then my shoulder. I fight through

it. Later that week, the tingling moves down the

right side of my body. When my right leg and

foot go numb, I drive myself to the hospital for

answers.

Twelve hours later, I hear the doctor

saying, “There is an abnormality on the MRI.”

For a split second, my world stops. “Wait, did

you say abnormality?” I ask. He begins talking

about demyelination on the cervical spine,

“which is indicative but not conclusive of MS.”

Indicative but not conclusive? Why would

he plant such a seed of worry in my mind

without a firm diagnosis? Sleep doesn’t come

easily that night as I lie on a gurney in the ER,

under bright lights in the hallway by the nursing

station. I barely sleep, and I cry while coming

to terms with the impending diagnosis. In the

morning, with friends and my mother by my side,

I undergo another MRI, this time with a tracing

agent for more accuracy. Afterwards, I meet with

the on-call neurologist, and I am diagnosed with

multiple sclerosis.

My philosophy is that I can face MS head on as long as I’m living as

my healthiest self.

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Over the next six months, I go into what I

call “How I’ll Live My Best Life with MS” mode,

by first accepting MS as my new sidekick and

then working hard to stay on top of research

about managing MS symptoms holistically.

Half a year after my initial visit to the hospital,

my MRIs show no new lesions, and my existing

lesions are smaller than at the time of my diagno-

sis. It’s now high on my list of priorities to remain

well informed about nutrition and MS so that I

can modify my lifestyle with all of the information

available to me.

LEFT Robyn competing in an obstacle course. Photo by Richard Lee Yuen.http://facebook.com/athlete.richardleeyuen RIGHT Robyn training. Photo by Peter Salama. www.petersalamaphotography.com

MS hasn’t stopped me from living my life—it’s simply

become a part of it.

MS CANADA Fall-Winter 20156

Adapting my nutrition

For many people, one of the biggest choices

you have to make at the time of an MS diagnosis

is how you want to treat the disease. For me, it

was important to optimize my health holistically

through diet, vitamin supplements, stress reduc-

tion and sleep before I tried disease-modifying

therapies. I wanted to see if I could help my body

fight the effects of MS naturally before choosing

conventional forms of treatment.

I met with a naturopath to ensure I was

optimizing my supplements to manage MS symp-

toms. I’d been taking a vitamin D supplement

before my diagnosis, but when my blood work

indicated a deficiency, I increased my dose and

became much more diligent about taking it.

I also submitted a food journal to a registered

holistic nutritionist and adapted my meal plans

to reduce inflammation and fix digestion issues.

Fitness goals

I train in a variety of ways: I’m in the gym doing

weights for my legs, back and shoulders two to

three times a week. I also train at an obstacle

course gym, which consists of functional fitness,

circuit training and obstacle training. We climb

ropes, cross monkey bars and learn how to climb

over walls.

I have big fitness goals—by the time this

article goes to press, I will have competed in

20 races, including eleven obstacle course races

(two in the winter), a snowshoe race, three road

races and more. The last five races were the most

intense obstacle courses I have ever faced.

I am determined not to let MS slow me down.

Doing what’s right for you

The thing about MS is this: sometimes you need

to step back and give yourself time to recover.

After undergoing steroid treatment at the time of

my diagnosis, I spent three weeks resting before

I could train again.

Since that time, I’ve seen myself getting

stronger. I’ve regained and gained even more

endurance than before. As my first relapse fades

into the past, I’m seeing my symptoms decrease.

I’ve learned how to adapt my physical activity

to work around my symptoms. I still experience

hand tremors, tingling and numbness when I’m

overheated, but I wear cooling vests or towels

to bring down my core temperature. I’ve also

learned that resting is of utmost importance, and

I take extra steps to recover from my workouts.

I know that it’s important for me to take ice baths

after races and nap when I’m exhausted.

My philosophy is that I can face MS head on

as long as I’m living as my healthiest self. I docu-

ment my personal journey at RobynBaldwin.com,

where I write about training, races, food prep,

books, adventures in my city, experiences that I

love—and how MS fits in to all of that.

MS hasn’t stopped me from living my life—

it’s simply become a part of it.

Follow Robyn on Twitter and Instagram @RobynBaldwin

For more resources on fitness and MS, visit mssociety.ca/physicalactivity

Robyn’s lifestyle tips2

Invest in cooling technology

Cooling vests are helpful

before and after workouts.

During exercise, wrap cooling

towels around your neck to

prevent overheating.

3Reduce inflammation and stress

Every night, I take a five-minute ice bath,

followed by a 15-minute warm Epsom salt

bath. The ice bath is especially important

after a hard workout or race, and it sets

me up for a great sleep.

1Sleep eight hours

Sleep has become my priority

(even over morning workouts!),

as it ensures I’m functioning at

my best.

7

ResearchRisk factors

It’s no secret that Canada has the highest

rate of multiple sclerosis in the world. The

question that continues to elude researchers

is: Why Canada? Decades of observation have

revealed that people living in certain regions,

possessing certain traits and receiving exposure

to certain influences are more susceptible to MS.

Also — women are three times more likely to

develop MS than men. These variables, termed

risk factors, may tell us more about what causes

MS and why certain people are more likely to

develop MS than others.

Researchers are discovering that there

is probably no one cause of MS; instead, a

multitude of risk factors may influence a person’s

chances, or risk, of developing the disease.

Fixed risk factors, like age, sex or genetic

makeup, are predetermined and beyond our

control. Modifiable risk factors, like smoking and

vitamin D intake, are lifestyle and environmental

influences that may be controlled — although

trying to manage them can be a challenge.

Over the years, researchers have identified

a number of risk factors that, to varying degrees,

may play a role in triggering the disease.

FIXED RISK FAC TORS

MODIFIABLE RISK FAC TORS

MS CANADA Fall-Winter 20158 Remain informed on all things MS research

at mssociety.ca/msupdates

Nature vs. nurture—or both

The study of family members of people living

with MS can tell us whether MS is passed down

from one generation to the next through our

genes. Compelling evidence from genome

studies suggests that variations in dozens of

genes – particularly those involved in regulating

the immune system – can predispose a person

to developing MS; however, genetic inheritance

doesn’t appear to be the full story.

Some interesting observations of MS

risk factors come from studies of migrating

populations. First-generation immigrants who

migrate from certain countries with low MS

rates (particularly in the Middle East and South

Asia) to countries with high MS rates appear to

retain the low risk of their native country if they

migrated after early adolescence. In contrast,

people who migrate during childhood and early

adolescence appear to take on the higher risk of

their new home, although certain studies have

found that all age groups are vulnerable. These

studies suggest that certain people are born

with a genetic predisposition to MS and that,

when exposed to certain environmental factors,

they are caught in a “perfect storm” that trig-

gers the harmful autoimmune reaction that is a

hallmark of the disease.

Things we can control: Modifiable risk factors

Researchers have been studying lifestyle and

environmental MS risk factors for many years.

Dr. Helen Tremlett, an expert in population

health studies at the University of British Col-

umbia, and doctoral candidate Kyla McKay

recently published an exhaustive and critical

systematic review of MS risk factors. “A lot of

research has been done exploring the modifi-

able risk factors for MS; however, there are still

gaps in our knowledge” says Dr. Tremlett. “Most

of the research to date has focused on the more

common relapsing-remitting form of MS, so

much less is known about the risk factors for

primary progressive MS.”

Dr. Tremlett and Ms. McKay have reviewed

and compared a number of factors that may

play a role in triggering all forms of the disease.

Prior infection with the Epstein-Barr virus

(EBV) has emerged as a strong contender; EBV

is responsible for infectious mononucleosis

during adolescence. While the EBV infection

is widespread around the world and is mostly

asymptomatic, nearly every person living with

relapsing-remitting MS tested to date is posi-

tive for EBV antibodies. A history of infectious

(symptomatic) mononucleosis pushes the risk

for relapsing-remitting MS especially high,

although an association with primary-progres-

sive MS is less clear.

Other modifiable factors have also been

linked to MS risk. Vitamin D, the “sunshine

vitamin” that is synthesized in the skin through

exposure to the sun’s rays, is thought to pro-

tect against MS. This knowledge may partially

explain the higher rates of MS in countries

further from the equator, where sunlight expos-

ure is too low for people to produce vitamin D

for half the year. As more information on the

link between vitamin D and MS is uncovered,

the Canadian guidelines for vitamin D intake

may change.

Finally, cigarette smoking has historic-

ally been associated with an increased risk of

relapsing-remitting MS, although Dr. Tremlett

insists that more studies are needed to examine

how smoking affects disease progression and

primary-progressive MS onset since that link is

far less certain.

Dr. Tremlett and Ms. McKay agree that

mapping out risk factors for MS is a critical area

of research. “People who may be at a higher risk

of MS can be mindful of the known modifiable

risk factors and adapt their behaviour to hope-

fully reduce their risk of MS.”

9

Living WellWinter safety toolkit

Canadian winters can make daily life

especially challenging for people living with

a disability. Weather-related limitations can

present barriers to participation in everyday

activities, and people living with MS may feel

removed from their community during the

winter months—which could exacerbate the

physical and psychological symptoms of MS.

For people living with both relapsing-

remitting and progressive forms of MS, ice,

snow and uneven surfaces can mean an

increased risk of falling, heightened fatigue

and difficulty getting around, among other

challenges. While our municipalities have a

responsibility to ensure people living with dis-

abilities can remain mobile during our winters,

there are also things you can do to stay safe. Kat

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The toolkit

PNEUM ATIC TIRES

If you rely on a wheelchair

to get around, make sure your tires have good

traction so you can travel

safely over icy surfaces.

CHAINS , CLE AT S OR NON-SLIP

S TUDS Ensure your

footwear has good traction. Winter boots

should have soles with grip for

ice, but not so thick as to lose

your connection to the ground

surface.

ICE G RIPPERS ON MOBILIT Y

C ANES AND WALKERS These can

provide stability on uneven and

slippery surfaces

like snow and ice.

KIT T Y LIT TER Rock salt is commonly

used on ice in winter, but it can melt the

snow and make surfaces even more slippery. Kitty litter is a

good alternative for your own

walkways.

CELLPHONE Remember to take your

cellphone with you whenever

you leave the house.

REFLEC TIVE G E AR

Wear bright colours and

add reflective gear to your winter coat to stand out against the snow or in the dark.

MS CANADA Fall-Winter 201510

Staying safe during extreme weatherPeople with disabilities are disproportionately affected by winter storms,

whether they are outdoors or in their homes. It’s important to have a plan in

place for winter emergencies like power outages, floods, blizzards or ice storms.

Here’s a basic to-do list to make sure you’re prepared for an emergency situation.

Remember—support groups are a good place to share information and connect

with people who share a similar experience. Join a support group to gain more

strategies for getting around in winter from other people living with MS.

For more information on local support groups or adapted activities offered

in your area, call your local MS Society chapter at 1-800-268-7582

(programs may vary according to location).

Did we miss any safety tips you use to help you manage your MS in winter? Tweet @MSSocietyCanada to let us know.

Build a support network of people you

trust who will check on you in the event of

an emergency.

Plan an escape route in case a home evacuation is necessary, and include

details about how you will call for help if it is needed.

Secure backup power sources for medical

equipment that requires electricity or

batteries.

Stock up on medications and other

supplies in the event of an interruption of homecare services.

Stock your pantry with enough canned goods and other non-perishables to

last a week.

Keep a flashlight and extra batteries in an easily

accessible place in case of a power outage.

Keep blankets, warm clothing and first aid supplies stocked and

handy.

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My MS Journey York Region’s WHEEL DANCE groupBY SONJA VEG

Dancing is an activity that my husband Ivan

and I have always enjoyed, but it became

more difficult as my MS progressed. At family

weddings, we could only sway together to the

music, with little opportunity to fully connect to

the music and to one other on the dance floor.

While my mobility decreased, my desire

to be active remained strong. In October 2014,

I saw the York Region WHEEL DANCE group

perform wheelchair ballroom and Latin dance at

a local event and thought, I have to try that.

Now we have dance in our lives again. We

connect to one another’s movements on the

dance floor as we work together to interpret the

music. The experience has brought us closer

and is very romantic.

There was a time when I wasn’t sure I’d

feel this way again in my marriage. I’m generally

a very positive person, but even I can admit that

life with MS hasn’t been easy. MS affected all of

the decisions we made as a family, from daily

living to the type of vacation we could manage.

My husband became my caregiver.

Dancing has helped realign the way we

relate to one another, and has given us the

opportunity to improve our physical fitness

together. It wasn’t easy getting started. Dancing

requires core muscle strength, precision and

practice. When I began, I was using a 40-year-

old wheelchair, which was heavy and difficult to

manoeuver. WHEEL DANCE purchased special

sports wheelchairs (lighter chairs with slanted

wheels) for us to use during class time. Suddenly,

it was like I had new legs.

Ivan had his challenges at the beginning

as well. He runs a company by day, so he’s used

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Now we have dance in our lives again. The experience

has brought us closer and is very romantic.

MS CANADA Fall-Winter 201512

to being the boss. On the dance floor, he’s my

equal, and he had to learn to trust that I wouldn’t

run over his toes! After a few classes, he began

to understand the subtle dynamics of connec-

tion between dance partners, and became a

gentle leader.

Our instructors challenge us during each

class, setting the bar for achievement very high.

We’re up for the challenge and are dedicated

to giving our best to each other and the class.

Our hard work has paid off. We recently per-

formed at two Pan Am/Para Pan Am Games

celebrations in Toronto, which was such a thrill.

If you ever have the chance to try WHEEL

DANCE’s classes, please do it. Classes are sub-

sidized (only $5 per class per couple). For those

who attend on their own, there are volunteers

on site who fill in as standing partners. Forget

your shyness and follow the music. You won’t

be sorry.

To learn more about joining a WHEEL DANCE class near

you, contact:

www.wheeldance.ca

www.facebook.com/wheeldance

wheeldance@outlook.com

647-297-3198

John Tory strikes a pose with York Region’s WHEEL DANCE group.

1 3

For more practical tips on living well with MS, visit msanswers.ca

KEEP YOUR LIFE CONSIS TENT.Assign specific places in your home for frequently used things, like keys or glasses, so that you know where to find them.

When I was first diagnosed with MS, I developed little tricks to help me cope with cognitive symptoms. I’ll set alarms on my cellphone or text myself to remember things. The act of putting pen to paper has always helped me commit things to memory, so I keep a day planner.

Expressing what’s on my mind is sometimes hard for me. Thoughts will be clear in my head, but they just won’t come out the same way when I try to articulate them. Thinking out loud to myself feels reassuring and helps me work through that. I also read a lot to keep my mind sharp. — LIZELLE, DIAGNOSED IN 2007

S TAY COOL . Besides the physical effects of heat sensitivity, many people living with MS report heat as a trigger for their cognitive changes. Keeping your core temperature down may help you keep a clear head. Cooling clothing, air conditioning and cold drinks are good ways to prevent overheating.

IDENTIF Y YOUR TRIG G ERS . Become aware of the environmental factors that may trigger your cognitive changes. If you’re sensitive to background noise, find a quiet space to focus on your work. Fatigue and cognition appear to be inter-related, so make sure to get lots of rest—and know when to take a break!

For more information on coping with cognitive changes, visit mssociety.ca/cognition

AT TEND A SUPP ORT G ROUP.MS support groups are communities that connect people with shared experiences to emotional support and practical information. Learning how others cope can lead you to more resources and remove the feeling of stigma that often comes with the invisible symptoms of MS.

For some people, multiple sclerosis is an invisible illness. Cognitive impairments such as short-term

memory loss, difficulty concentrating and altered moods can have a large impact on quality of life

for people living with the disease and their loved ones.

Research on treatments for cognitive impairment is ongoing, but cognitive rehabilitation with

an occupational therapist is a great way to develop compensatory strategies for people who live

with these symptoms. While coping strategies may not reverse the symptoms themselves, they can

provide efficient alternative ways to perform tasks that have become difficult.

Here are a few tricks for managing the cognitive changes due to MS.

Practical MattersCoping strategies for cognitive changes

SE T REMINDERS YOU C AN ’ T AVOID.Leave sticky notes on your front door or bathroom mirror to remind you about appointments or taking medication.

MS CANADA Fall-Winter 20151 4

The ultimate adventure challenge Dominique DeschampsDominique Deschamps is a woman that neither

multiple sclerosis, Kilimanjaro, the Sahara, Mount

Everest, Acotango nor Machu Picchu has defied,

and none of them have even succeeded in slow-

ing her down. Her greatest strength is her ability

to bring people together to help people with

multiple sclerosis.

Since 2009, Dominique has participated in

five MS Adventure Challenges for which she has

raised no less than $50,825. Her unconditional

commitment to helping others, positive attitude,

and persistent nature make her an inspiration for

people who receive a diagnosis of MS.

Dominique’s participation in the MS Adven-

ture Challenge requires numerous fundraising

efforts. “Seeking support around me is not

always easy. We must roll up our sleeves and

find good ideas. The act of talking about my

situation to my colleagues and friends allows

me to demystify some aspects of the disease,

still unknown to many people.” By organizing

fundraising activities, Dominique rallies the

people she loves around a cause close to her heart

and also raises awareness about the importance of

volunteering.

From the beginning of this great adventure,

Dominique’s dedication has been motivated by

her desire to contribute to finding a cure for MS

and helping people who live with the disease.

Despite rigorous training, high level challenges

and symptoms of the disease, she persists,

surpasses herself and maintains hope for a future

without MS.

Her journey through the desert and its

many challenges allowed Dominique to reach

the unreachable in the company of people who

experience the same reality as her. “When you

reach the top, the great feeling of accomplishment

exceeds the exhaustion caused by your physical

efforts,” she says.

She’s currently planning her next challenge

and already thinking enthusiastically about the new

fundraising activities that will allow her to fly to

Greenland in 2016. Have a good trip, Dominique!

1 5

Follow the LeaderChanging one student’s life

Allie Sherwin isn’t your typical high school

student. She’s a lifeguard and swim instructor

for kids and adults with disabilities. She plays

on multiple sports teams and is involved with

many clubs. Yet despite her hectic schedule,

she maintained high grades in the gifted

program at Northern Secondary School. And

she has big career plans.

Allie, whose mother has primary-progressive

multiple sclerosis, began her studies at Western

University in September, which she hopes will

lead to a career in MS research. “MS is such a big

part of my life,” she says, “so a career in MS just

suits me and it’s what I feel passionate about.”

But Allie isn’t walking this path alone.

Thanks to the KRG Children’s Charitable

Foundation, Allie will receive a $100,000 scholar-

ship towards her expenses throughout her

four-year undergraduate degree. It’s a life-changing

investment.

And according to Steven Wise, chairman of

the KRG Children’s Charitable Foundation, that is

exactly the point. “We have been helping young

Canadians lead happier, healthier and more

proactive and productive lives for almost 20 years,”

says Wise. “For us it’s all about impact. In this case

the question was, how can we help someone

dealing with MS to fulfill their dreams of pursuing

a post-secondary education?”

After much consideration, Wise and his team

at the Foundation settled on the Follow the Leader

scholarship fund, of which Allie is the first recipient.

The scholarship is an innovative way to support

high-achieving young people who are affected

by MS.

“It’s such an amazing opportunity,” says Allie.

“It’s been hard to watch my mother’s health slowly

get worse. This scholarship will help me make a

difference in the lives of people who are dealing

with the same thing.”

Young adults like Allie, who have grown up

with MS in their family, often face a number of hard-

ships throughout their childhood that can affect

their ability to pursue a post-secondary education.

Thanks to the KRG Children’s Charitable

Foundation, this won’t be a concern for Allie

Sherwin.

Applications for the next Follow the Leader

scholarship will open in March 2016. All details will

be available on mssociety.ca

Action on MSFlexibility: Changing income and employment supports for people affected by MS

An episodic illness is a condition characterized

by fluctuating periods of disability and wellness.

Multiple sclerosis is a chronic, progressive and

episodic illness that affects 100,000 Canadians,

many of whom are struggling to remain in the

workforce. Canada’s sickness benefits often do

not cater to people with episodic illnesses, who

may not qualify for benefits because they are

not “sick enough” to remain permanently out

of the workforce. The fact is, many Canadians

with MS can work—except when they are

experiencing a relapse and need support. And

people with MS who can’t work have trouble

getting by on the limited financial assistance

offered under current government programs.

Today in Canada, when you are diagnosed

with a chronic or episodic illness and need

to take time off work, your options vary

depending on where you live. If you’re living

in Quebec, you can take 26 weeks off work to

recover—but the leave is unpaid. If you’re living

in Alberta, British Columbia or Nunavut, your

employer has no obligation to grant sick leave at

all. Employers in most provinces and territories in

Canada provide just 10 days of sick leave or less,

and only 60 per cent of Canadian employers offer

arrangements that are above these requirements.

When someone gets sick, however, the reality is

that they are away for an average of 10 weeks.

Short-term benefits do not allow for

the unpredictability of a chronic or episodic

illness like MS—if your relapse persists past the

maximum duration rate for short-term benefits,

you’re forced to remain off work to access long-

term disability or draw on your own savings to

ride out your relapse.

SICK LE AVEUnpaid, length varies by province

PRIVATEINSUR ANCE

Varies by insurerAverage 33% drop in earnings

Short-term max duration:17–26 weeks

EMPLOYMENTINSUR ANCE

Two-week waiting period40% decrease in earnings Short-term max duration:

15 weeks

short-term

supports

long-term

supports

THE S TANDARD SUPP ORT S FUNNEL

When a relapse persists:

SOCIAL A SSIS TANCE

Varies by province,

50% decrease in

earnings

CPP -D/QPP -D

$465.84 / month +

75 % of the retirement

pension, dependent

on previous

contributions16

17

Steps toward change:

Institute for Research on Public Policy

On June 17, 2015, 33 key influencers repre-

senting some of Canada’s best thinkers on social

policy met to discuss the current landscape of

employment and income supports in our coun-

try. The MS Society, along with the Canadian

Cancer Society and the Canadian Caregiver

Coalition, sponsored the discussion hosted by

the Institute for Research on Public Policy, who

subsequently released a comprehensive paper

entitled “Leaving Some Behind: What Happens

When Workers Get Sick”.

The report calls for action, from long-

term directions to immediate reforms the

federal government can establish to help

Canadians with episodic and chronic illnesses.

The following are some of the action items

we will be advocating for as part of the IRPP

collective, whose goal is to make sure Canadians

with episodic and chronic illnesses don’t get

left behind.

Above all, our governments need to revisit

the definition of “disability”—with 1.2 million

Canadians living with an episodic disability or

other forms of debilitating chronic illness, it’s

time our benefits caught up to the reality that

“disability” doesn’t necessarily mean “permanent”.

We also need to create equity in providing access

to broader insurance coverage for all Canadians.

Not only are we pressing for Canada’s

governments to improve the income support for

people affected by MS who are unable to work,

we are asking them to accelerate MS research

by investing in the development of therapies for

people living with progressive MS.

1.2million

working-age Canadians who live with an episodic or chronic illness or

disability

Up to

80%Canadians with MS

who will be unemployed

95,000people who left the labour force entirely

because of a disability (2014)

For more information and to access the IRPP report in full, please visit http://bit.ly/1JDrORl

Short-term reforms1 Extended duration of EI benefits and creation of a flexible work-sharing program,

so that a person can reduce work hours while receiving EI income

2 The expert dissemination of information and hands-on support to employers on

roles, best practices and resources available when an employee is diagnosed with an

illness and may require time away or accommodations so they can continue to work

Long-term directions1 The standardization of program parameters across the disability support system

2 The enhancement of disability insurance coverage within the labour market to

account for people with episodic and chronic illnesses

3 The general improvement of disability insurance coverage in amount and length

of time accessed, to cover both short and long-term insurance needs

MS CANADA Fall-Winter 20151 8

Ontario MS Ambassadors meet with government representatives over the summer

Access to quality care, better supports for care-

givers, expanded support for independent living

and employment and income provisions are

only some of the issues that MS Ambassadors

across Ontario have been urging their members

of provincial parliament (MPP) to seriously

consider. In addition, ambassadors have been

asking MPPs to join “Team Fight” and take the

pledge to show their support for ending MS.

Meetings during the summer months yielded

good results, and relationships formed with key

government representatives.

To kick off the series of constituency meet-

ings, MS Ambassadors participated in World MS

Day in May, which is the MS movement’s annual

campaign to raise awareness of the disease.

To commemorate the day, MPPs wore red

carnations during question period in support

of people affected by MS.

Join the MS Ambassador programThe MS Ambassador program is looking for

interested volunteers to join our dynamic team.

The program helps to expand government

relations activities that advocate for people living

with MS, and create awareness of MS issues in

communities across Ontario. The program is

strategically focused and offers people affected

by MS an opportunity to advocate for change.

The role of the MS Ambassador is variable,

and the time commitment is influenced by

current and emerging issues taking place in the

community, within the MS community and within

government. Some key activities that involve MS

Ambassadors include:

1 Community meetings with elected officials

2      Day at Queen’s Park, an annual event

to discuss and present issues to key

government stakeholders

3  Webinar training sessions

4  Other community awareness opportunities

If you are interested in advocacy and public policy, we want to hear from you. Contact Abidah Shamji, manager of government relations, at Abidah.Shamji@mssociety.ca to learn more.

19

Message from YvesThis year, we remember an important mile-

stone in the MS research narrative: twenty

years ago, Canadians gained access to the first

disease-modifying therapy for relapsing-remit-

ting MS. Since 1995, Canadian MS research has

broadened its scope and answered many ques-

tions about the complexity of MS, its symptoms

and ways to improve quality of life. One question,

however, continues to elude us: why are Can-

adians at such a high risk for developing MS?

While the exact cause of MS remains a

mystery, our growing knowledge of risk factors is

carving a path to concrete answers. Research is

revealing that there is no one cause of MS; rather,

a combination of factors contribute to a person’s

likelihood of developing the disease. While we

know that factors beyond our control, such as

genetics, influence the development of MS, we

also have solid evidence that factors we can

control—such as vitamin D deficiency, salt intake

and smoking—play an important role in MS.

Research developments on risk factors

allow us to enhance our role as a trusted com-

municator about MS and its possible prevention.

Specifically, this research guides the expansion of

our education and awareness initiatives, so that

we may provide those Canadians identified as

“high risk” with more information on the pos-

sible causes of MS. More information translates

to more informed choices, and we embrace the

opportunity to further educate Canadians about

MS and empower those living with the disease.

Robyn Baldwin, featured on the cover of

this issue of MS Canada, writes about taking

control of her own life through exercise and

lifestyle choices that empower her throughout

her journey with MS. Last summer Robyn took

further action against her disease by hosting an

I Challenge MS event. Working with her local

gym, Robyn hosted an obstacle course race that

raised nearly $4,000 for Canadians living with

MS. We were pleased to launch the I Challenge

MS platform this year to enable Canadians to

fundraise for research and services in a way that is

most convenient for them. Visit IChallengeMS.ca

to start your own event or get some inspiration.

As this issue of MS Canada went to press,

the results of the federal election were unknown.

What we do know, however, is that our current

government has a responsibility to improve

employment and income supports to Canadians

with MS, as recommended by a recent report

by the Institute for Research on Public Policy.

The report calls for supports that are more

flexible and inclusive of people with episodic

and chronic illnesses, and we are active

members of a collective that is working to

transform these recommendations into reality

for Canadians affected by MS. To take part in

this advocacy work, visit mssociety.ca/advocacy

to become an MS Ambassador and press

government officials to effect change in ways

that matter most to you.

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