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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
Cover photo by Noel Daganta (ndpix.com).
ISSN 0315-1131Canadian Publications Mail ProductSales agreement no. 40063383
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
FSC FPO
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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.
No
el D
ag
anta
(n
dp
ix.c
om
).
5
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
ie S
ch
en
k Fl
ickr
Cre
ativ
e C
om
mo
ns.
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.
Bar
bar
a L
. Han
son
| F
lickr
Cre
ativ
e C
om
mo
ns.
11
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
Bar
bar
a L
. Han
son
| F
lickr
Cre
ativ
e C
om
mo
ns.
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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