Fall-Winter 2015 - MS Society of Canada

Fall-Winter 2015

FEATURE STORY Living fit with MS by Robyn Baldwin

RESEARCH

LIVING WELL

ACTION ON MS

Risk factors

Winter safety toolkit

Flexible income supports

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, Fall/Winter 2015 Multiple Sclerosis Society of Canada Suite 500, 250 Dundas St W, Toronto, ON M5T 2Z5 1-866-922-6065 F: 416.922.7538 [email protected] mssociety.ca/mscanada Charitable registration no. 10774 6174 RR0001 Cover photo by Noel Daganta (ndpix.com). ISSN 0315-1131 Canadian Publications Mail Product Sales agreement no. 40063383 President and chief executive officer: Yves Savoie Editor-in-chief: Tiffany Regaudie Managing editor: Meaghan Kelly Editorial committee & contributors Angelica Asis, research Nick Dehod, Alberta & NWT Division Ilana Hirt, leadership giving Rebecca Horan, Manitoba Division Judith Kays, Atlantic Division Julie Kelndorfer, government relations Lisa McCoy, Ontario Division Lee Nichols, leadership giving Sylvie Rousseau, Quebec Division Andria Samis, programs & services Peter Schwarz-Lam, research Pam Seto, marketing & communications Carissa Trenton, Saskatchewan Division Rowena Veylan, BC & Yukon Division

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O N TA R I O EDITION

Fall-Winter 2015

FE ATURE

Living fit with MS by Robyn Baldwin

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inform RE SE ARCH

Risk factors

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LIVING WE LL

V i s it to iet y.ca m sso c ase d tent b n o c e se ti o n , r lo c a u o y on n ew se o ur u d n a y s ib i l it a c ce s es . f e atu r

Winter safety toolkit

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relate MY MS JOURNE Y

York Region’s WHEEL DANCE group by Sonja Veg

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PR AC TIC AL M AT TE RS

Coping strategies for cognitive symptoms

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act THE ULTIM ATE ADVE NTURE CHALLE NG E

Dominique Deschamps

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FOLLOW THE LE ADE R

Changing one student’s life

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AC TION ON MS

Flexible income supports

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ONTARIO MS A MBA SSADORS

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Message from Yves

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Living fit with MS BY

Robyn Baldwin

My philosophy is that Noel Daganta (ndpix.com).

I can face MS head on as long as I’m living as my healthiest self. 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.

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M S C A N A DA Fall-Winter 2015

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.

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 LEFT

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,

MS hasn’t stopped me from living my life—it’s simply become a part of it.

my MRIs show no new lesions, and my existing lesions are smaller than at the time of my diagnosis. 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.

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Sleep eight hours Sleep has become my priority (even over morning workouts!), as it ensures I’m functioning at my best.

Robyn’s lifestyle tips 2 Invest in cooling technology Cooling vests are helpful before and after workouts. During exercise, wrap cooling towels around your neck to prevent overheating.

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 reduction 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 symptoms. 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.

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Reduce 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.

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 document 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

Research Risk 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.

F IXE D RI S K FAC T O R S M O D I F I A B LE RI S K FAC T O R S

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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 triggers 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 Columbia, 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 modifiable 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.”

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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 positive for EBV antibodies. A history of infectious (symptomatic) mononucleosis pushes the risk for relapsing-remitting MS especially high, although an association with primary-progressive 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 protect against MS. This knowledge may partially explain the higher rates of MS in countries further from the equator, where sunlight exposure 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 historically 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 hopefully reduce their risk of MS.”

Remain informed on all things MS research at mssociety.ca/msupdates

Living Well Winter safety toolkit

Katie Schenk Flickr Creative Commons.

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 relapsingremitting 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 disabilities can remain mobile during our winters, there are also things you can do to stay safe.

The toolkit

P N E U M AT I C T I RE S

If you rely on a wheelchair to get around, make sure your tires have good traction so you can travel safely over icy surfaces.

KI T T Y LI T T E R

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.

I C E G RI P P E R S O N M O B I LI T Y CANES AND WA LKE R S

CH A I N S , CLE AT S O R N O N -S LI P STUDS

These can provide stability on uneven and slippery surfaces like snow and ice.

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.

RE F LE C T I V E GEAR

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

CE LLP H O N E

Remember to take your cellphone with you whenever you leave the house.

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Barbara L. Hanson | Flickr Creative Commons.

Staying safe during extreme weather People 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.

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.

Stock your pantry with enough canned goods and other non-perishables to last a week.

Secure backup power sources for medical equipment that requires electricity or batteries.

Keep a flashlight and extra batteries in an easily accessible place in case of a power outage.

Stock up on medications and other supplies in the event of an interruption of homecare services.

Keep blankets, warm clothing and first aid supplies stocked and handy.

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).

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

My MS Journey York Region’s WHEEL DANCE group BY S O N JA V E G

Now we have dance in our lives again. The experience has brought us closer and is very romantic.

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-yearold 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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To learn more about joining a WHEEL DANCE class near you, contact: www.wheeldance.ca www.facebook.com/ wheeldance [email protected] 647-297-3198

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

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 connection 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.

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Our hard work has paid off. We recently performed 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 subsidized (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.

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

Practical Matters Coping strategies for cognitive changes 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

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. S TAY CO O L .

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.

I D E N T I F Y YO U R T RI G G E R S .

AT T E N D A S U P P O R T G RO U P.

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!

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.

KE E P YO U R LI F E CO N S I S T E N T.

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

SET REMINDERS YO U C A N ’ T AVO I D.

Leave sticky notes on your front door or bathroom mirror to remind you about appointments or taking medication.

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

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The ultimate adventure challenge Dominique Deschamps Dominique 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 slowing 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 Adventure 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

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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!

Follow the Leader Changing 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 scholarship 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 hardships 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

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Action on MS

Flexibility: 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 longterm disability or draw on your own savings to ride out your relapse.

T H E S TA N DA RD S U P P O R T S F U N N E L

When a relapse persists: S I CK LE AV E Unpaid, length varies by province

P RI VAT E I N S U R A N CE Varies by insurer Average 33% drop in earnings Short-term max duration: 17–26 weeks S O CI A L A S S I S TA N CE

Varies by province, 50% decrease in earnings 16

shortterm supports

longterm supports

E M P LOYM E N T I N S U R A N CE Two-week waiting period 40% decrease in earnings Short-term max duration: 15 weeks CP P - D/Q P P - D $ 465.84 / m onth + 75 % of the retirement pension, dependent on previous contributions

Up to

80%

Canadians with MS who will be unemployed

1.2

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

Steps toward change: Institute for Research on Public Policy On June 17, 2015, 33 key influencers representing some of Canada’s best thinkers on social policy met to discuss the current landscape of employment and income supports in our country. 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 longterm 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

95,000

people who left the labour force entirely because of a disability (2014)

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.

Short-term reforms 1 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 directions 1 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

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

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Ontario MS Ambassadors meet with government representatives over the summer Join the MS Ambassador program

Access to quality care, better supports for caregivers, 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 meetings, 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.

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The 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 [email protected] to learn more.

Message from Yves This year, we remember an important milestone in the MS research narrative: twenty years ago, Canadians gained access to the first disease-modifying therapy for relapsing-remitting MS. Since 1995, Canadian MS research has broadened its scope and answered many questions about the complexity of MS, its symptoms and ways to improve quality of life. One question, however, continues to elude us: why are Canadians 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 communicator 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 possible 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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PARTNERS in PROGRESS Make a monthly gift to the MS Society of Canada and become a Partner in Progress. Canada has the highest rate of MS in the world, and you can help us end this disease.

97%

of our funding comes from private donations from supporters like you!

Become a monthly donor and join the fight to end MS today. Visit mssociety.ca/monthlygiving

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