Research and treatment timeline: 30+ years of ms milestones | 4

Volume 39 • Issue 2
Research and
treatment
timeline: 30+
years of ms
milestones | 4
3 5
Research Portal:
you can participate
in ms research
CANADA
FAll/WINTeR 2012
special feature:
spotlight on
research
mssocIeTy.cA

ms canada Fall/Winter 2012 2
am often reminded,
I during conversations
with people living with
multiple sclerosis,
that hope for an end
Yves savoie
to MS can mean
very different things
to different people. Whether it’s hope for a
cure or hope for more effective symptom
management, we are hopeful that advances
in research will one day offer a means to an
end to MS. This issue of MS Canada focuses
on research, past and present. Through
increasing our knowledge about multiple
sclerosis we are hopeful that a future free of
this disease can exist.
We welcome the federal government’s
announcement that the Phase I/II clinical trial
for chronic cerebrospinal venous insufficiency
(CCSVI) has received the necessary medical
and ethical approvals required to proceed.
The national MS interventional clinical trial
is a collaborative initiative between the
Government of Canada, provinces where there
are trial sites and the MS Society. We are
hopeful that the research of Dr. Traboulsee
and his collaborators will provide significant
insights to those living with MS and provide
answers on questions about CCSVI and MS.
My sincerest thanks to those who provided
feedback on the Renewal Initiative, a 12-month
process of engagement that sought ways for
Ms Canada, Fall/Winter 2012
Published by the Multiple Sclerosis Society of Canada
175 Bloor St. E., Suite 700, Toronto ON M4W 3R8
Tel: (416) 922-6065 • Fax: (416) 922-7538
Toll free: 1-866-922-6065 • Website: mssociety.ca/mscanada
Charitable Registration no. 10774 6174 RR0001
Our Mission: To be a leader in finding a cure for multiple sclerosis
and enabling people affected by MS to enhance their quality of life.
President and chief executive officer: Yves Savoie
Editor-in-chief: Tiffany Regaudie
Managing editor: Krysta Celestine
ISSN 0315-1131
Canadian Publications Mail Product
Sales Agreement No. 40063383
Message from yves
the MS Society to be more effective and
efficient in delivering upon its mission. To those
who provided input during this process, please
know that you have played a significant role
in helping to ensure that we will continue to
best serve those affected by MS. For up to date
information on the Renewal Initiative please
visit mssociety.ca/renewal
I am also pleased to announce the
appointment of Owen Charters to the
position of chief development officer (CDO)
effective January 14, 2013. Owen has played
significant leadership roles spanning from
hospital foundations to member-based,
multi-level national organizations. Owen
served CanadaHelps as president and chief
executive officer since 2007 and is currently
adjunct faculty at the Schulich School of
Business at York University. Owen will provide
strategic vision and dynamic leadership as
the architect of the MS Society’s development
and marketing programs.
A note of recognition and gratitude is also
extended to Genzyme, a Sanofi Company,
for their support of this edition of MS Canada
through an unrestricted educational grant. I
have heard from people living with MS that
research brings them hope. I share in this
sentiment and hope that the future will also
bring answers and a cure. ■
Yves Savoie
Attention! We would like to keep in touch
via email. If you would like to receive future
issues of MS Canada electronically instead
of a printed version, please send your full
name, current address and email address to
mscanada@mssociety.ca
ON THE COVER: Dr. Jiwon Oh, winner of
the Decker Family endMS Research and Training
Network Transitional Career Development Award

Friendly Visiting Volunteer Program:
Companionship for long-term care residents
Clare, a former nurse with secondaryprogressive
MS, has lived in long-term
care for 12 years. While she is fortunate to
have many friends and family who visit her,
Clare is especially grateful for her friendship
with Robin, her visitor from the MS Society’s
Friendly Visiting Volunteer Program.
“Robin and I are so much alike,” Clare says.
“We hit it off right away.” Robin, who was
diagnosed with MS three years ago, visits her
every Thursday. “We just sit and share things,”
Clare says. “We go to the farmer’s market in
the morning when it’s a little cooler and when
we’re at a better energy level.”
A study led by Dr. Sharon Warren of the
University of Alberta 1 found that people with
MS who live in long-term care are often
isolated, lonely and at risk of depression. In
2008, the MS Society, Alberta and Northwest
Territories Division successfully advocated for
provincial government funding for the Friendly
Visiting Volunteer Program, which matches
Anne was diagnosed with multiple sclerosis
in April 2012, but she and her doctor
believe she has had the disease for more
than 20 years. “I’ve experienced a lot of
small, mysterious symptoms throughout my
life,” Anne says. “When I was finally able to
put a name to the disease, I tried to find out
everything I could about it.”
When Anne accessed the MS Society website,
she discovered the new MS Research Portal;
as a former nurse, Anne sees the value of
participating in medical research. To start,
Anne took part in Dr. Michelle Ploughman’s
extensive “Canadian Survey of Health
Lifestyle and Aging with MS,” which gathers
information on mental health, physical health,
volunteers with people with MS who would
benefit from companionship.
The program currently operates in Edmonton
and Calgary, where over 100 residents receive
visits from volunteers and staff who run the
program. The MS Society is working closely
with the Alberta government to expand the
program to rural Alberta.
Clare feels that Robin has become much more
than a visitor. The two share a very warm
friendship, and every week that they are
together, they provide each other with moral
support. The visits also give her a sense of
satisfaction. “I’m not nursing physically, but
I’m nursing on a psychological and spiritual
level,” Clare says.
For more information, visit mssociety.ca/
friendlyvisiting ■
1 Warren, S. et al. A profile of multiple sclerosis patients in long term
care centres using the Continuing Care Needs Determination Instrument
(CCNDI). Presented at the Consortium of Multiple Sclerosis Centres
Conference, Halifax, Nova Scotia, 2000.
MS Research Portal: you can participate in ms research
diet, exercise, smoking, stress and other
aspects of health in relation to the trajectory
of MS in one’s life.
The MS Research Portal website features
research studies in Canada that are
currently seeking participants. All studies
are supported by the MS Society or other
recognized funding agencies that have formal
peer review processes.
“Participating in research isn’t just for me,”
Anne says. “The information I provide is going
to help someone else with MS looking to
educate themselves on the disease.”
To access the MS Research Portal, visit
msresearch.ca ■
ms canada Fall/Winter 2012 3

ms canada Fall/Winter 2012 4
Research and treatment timeline: 30+ years of MS milestones
While there is still a long way to go in understanding multiple sclerosis and finding a cure, we
are pleased to look back on the important advancements that have been made to broaden our
understanding of this complex disease and improve quality of life.
For complete information on MS Society funded research, visit mssociety.ca/researchsummaries
For a more detailed version of the MS research timeline, please visit mssociety.ca/researchtimeline
Magnetic resonance imaging (MRI) first
used to examine a person with MS
Canadian researchers find gene
linkage to MS susceptibility
Rebif ® and Avonex ® (interferon
beta-1a) approved in Canada for
relapsing-remitting MS to reduce the
number of attacks, slow the progression
of physical disability and to reduce the
number of brain lesions seen on MRI
MSSRF funds study of $4 million over
six years that aims to determine whether
transplanting bone marrow stem cells in
people with MS can stop the disease
Link between vitamin D and the reduced
risk of MS identified
Dr. Paolo Zamboni identifies a
possible association between chronic
cerebrospinal venous insufficiency
(CCSVI) and MS
MS Society and the National MS Society
(USA) commit over $2.4 million to support
seven new research projects focusing on
CCSVI and its relationship to MS
MSSRF funds a $3.8 million study on
progressive forms of MS
1981
1996
1998
2000
2004
2008
2010
2011
1995
1997
1999
2004
2006
2009
2011
2011
Betaseron ® (interferon beta-1b) approved
by Health Canada for treatment of people
with relapsing-remitting MS
Copaxone ® (glatiramer acetate) approved
in Canada for people with RRMS who are
able to walk to reduce frequency of attacks
Multiple Sclerosis Scientific Research
Foundation (MSSRF) funds Canadian
Collaborative Project on Genetic
Susceptibility in MS, in the amount of
$4.7 million over three years
Betaseron ® (interferon beta-1b) approved
by Health Canada as a treatment for
secondary-progressive MS, to slow the
progression of disability and to reduce the
frequency of MS attacks
MSSRF funds a five-year, $4.3 million
study on children who experience an initial
attack of MS and who go on to experience
a second, in hope of identifying key triggers
which cause MS
Tysabri ® (natalizumab) approved for
treatment of RRMS to reduce the frequency
of relapses, delay the progression of
disability and reduce the number and
volume of brain lesions seen on MRI
Extavia ® (interferon beta-1b) approved in
Canada for reduction of relapses in RRMS
and slowing of disability in secondaryprogressive
MS
Gilenya ® (fingolimod), first oral diseasemodifying
therapy for MS, approved in Canada
MS Society funded study at the University
of Alberta discovers new MRI method that
measures iron levels in brain tissue to track
disease progression

special feature: Spotlight on research
Whether discovering new ways to treat symptoms or trying to find a cure, researchers
are working hard to make advances that will benefit the lives of people with MS. Through
research in the areas of myelin repair, symptom management, environment as a possible
cause and the development of treatments for MS, the research of today looks to form a
path to a brighter future for those who live with MS.
In this special feature, we are pleased to highlight some of the important research
happening right now in the MS community.
myelin repair
Myelin is
the fatty
coating that
protects and
surrounds nerve
fibres within the
central nervous
system. Often
compared to the
insulating material around electrical
wiring, myelin aids the conduction of
electrical signals between neurons
within the spinal cord and brain.
Multiple sclerosis involves the body’s
immune system attacking and
destroying myelin. Such demyelination
can cause interference in transmitting
nerve signals, which can cause blurred
vision, slurred speech, trembling and
cognitive difficulties.
Some approved therapies for MS
involve slowing down the body’s
immune system to prevent it
from attacking the myelin. Such
treatment can prevent the disease
from progressing and can minimize
attacks. Research is currently
ongoing with regard to developing
techniques to induce myelin repair
with antibodies; however, studies
are still exploring if this method can
be effective in restoring the loss of
myelin in humans.
What’s happening now
Michael Keough
university of Calgary
PhD studentship
Michael Keough is the recipient
of a 2012 MS Society of
Canada Doctoral Award for his
project, “Altering the Inhibitory
Microenvironment to Promote
Oligodendrocyte Maturation and Remyelination.”
Remyelination is characteristic in acute multiple
sclerosis (MS) lesions yet often fails in chronic
stages of disease. Oligodendrocyte precursor cells
(OPCs) reside in chronic MS lesions in immature
states, suggesting that inhibitory molecules in the
lesion environment cause remyelination failure.
Extracellular matrix molecules called “chondroitin
sulfate proteoglycans” are abnormally elevated in
chronic MS lesions, and data indicates that they are
responsible for remyelination failure.
Mr. Keough’s goal is to further analyze these
molecules and seek therapeutics to overcome
their inhibition of OPCs, such that remyelination
can be possible in chronic stages of MS.
“There are currently no MS medications targeted to
directly impact regeneration of lost myelin,” Keough
says. “A new angle of treatment, in combination with
current and advancing immunomodulatory therapies,
may be beneficial to people living with MS.”
ms canada Fall/Winter 2012 5

ms canada Fall/Winter 2012 6
symptom management
Symptoms of MS include pain, fatigue, bladder dysfunction, vision problems, difficulty
walking, cognitive change and dizziness.
Managing symptoms in MS is essential throughout the course of the disease. It is important
for those who live with MS to understand their symptoms and seek available methods to
improve quality of life. Proper symptom management involves understanding how MS can be
treated, seeking proper care from health professionals and maintaining a healthy lifestyle.
What’s happening now
Dr. Neil Rector
sunnybrook
Research Institute
Dr. Neil Rector is the
recipient of a 2012 MS
Society Operating Grant for
his project, “A Randomized
Controlled Trial Testing the Additive
Benefits of Cognitive Behaviour Therapy
(CBT) and Exercise for Depression and
Cognitive Dysfunction in MS.”
Dr. Rector’s goals are to investigate the
effects of CBT, exercise and a combination
of the two on episodes of depression and
neuropsychological functioning.
“The results of this clinical study will
provide an important contribution to
knowledge about the treatment and
associated neurocognitive aspects of
depression in MS,” Dr. Rector says.
“This study will be the first to determine
whether evidence-based, non-medical
treatments for mood disorders in MS
reduce underlying cognitive substrates
associated with the illness and known to
be exacerbated by depression.”
“
The results of
this clinical
study will
provide an
important
contribution to
knowledge about
the treatment
and associated
neurocognitive
aspects of
depression
in MS.
”

environment as a possible cause of MS
Multiple sclerosis is more common in people who live farther from the equator (although
many exceptions exist). Decreased sunlight exposure has been linked to a higher risk of MS.
Decreased vitamin D production and intake is the main biological mechanism used to explain
the higher risk of MS among those less exposed to sun.
A three-year study coordinated by the World Health Organization (WHO) and the Multiple Sclerosis
International Federation (MSIF) highlights prevalence of MS across the world. Canada has been
identified as being one of the countries with the highest prevalence of MS in the world.
What’s happening now
Dr. Afsaneh shirani
university of
British Columbia
Afsaneh Shirani is a recipient
of a 2012 MS Society
Postdoctoral Fellowship.
Dr. Shirani’s project
entitled, “Temporal Changes in Disability
Progression and Demographics in Multiple
Sclerosis” will investigate if disability
progression has changed over time in
patients with MS in British Columbia. It will
also examine whether there have been
changes in sex ratio (i.e. the number of
men and women with MS), onset age and
disease course over time in patients with
MS living in British Columbia, Nova Scotia
and Manitoba.
“The results of this project would contribute
to a better understanding of the natural
course of MS and may have important
implications for the role of environmental
factors in MS,” Shirani says. “This project
will also provide insights for better social,
economic and healthcare planning for
those with MS.”
“
The results of
this project
will contribute
to a better
understanding
of the natural
course of MS
and may have
important
implications
for the role of
environmental
factors in MS.
”
ms canada Fall/Winter 2012 7

ms canada Fall/Winter 2012 8
MS treatments
Thanks to research within Canada and around the world, new treatments for multiple
sclerosis are steadily emerging. Medications may decrease the severity of MS relapses caused
by increased inflammation in the central nervous system, but they may also treat symptoms
such as fatigue, pain and muscle tightness. These treatments look to improve the quality of
life for people with MS.
What’s happening now
Dr. Bradley Kerr
university of Alberta
Dr. Bradley Kerr was awarded
a 2012 Donald Paty Career
Development Award for his
project, “Examining the Underlying
Mechanisms of Neuropathic Pain in
Multiple Sclerosis.”
Chronic pain greatly impacts the quality of life for
people living with MS. Neuropathic pain occurs
when damage takes place within the nervous
system. Currently, there are not many effective
treatments to relieve this type of pain, as little is
known about what causes it.
Dr. Kerr aims to test whether the function of
glutamate transporters proteins that control pain
signals in the nervous system are impaired,
leading to neuropathic pain. He will go on to test
if a particular drug that is used to restore the
function of glutamate transporter can prevent
neuropathic pain. He will further investigate how
a clinical treatment that reduces inflammation
can affect neuropathic pain, and if it will have any
effect on glutamate transporters.
“My research program aims to identify the causes
of pain in MS,” says Dr. Kerr. “This will help
generate new therapies to improve the quality of
life for MS patients.”
“
My research
program aims
to identify the
causes of
pain in MS.
This will help
generate new
therapies to
improve the
quality of
life for MS
patients.
”

canadian Physical Activity Guidelines for Adults with ms
he Canadian Society for Exercise
T Physiology (CSEP) has released Canadian
Physical Activity Guidelines for Adults with MS.
The MS Society recommends these guidelines
for those living with MS who want to pursue
physical activity. These are the first set of
physical activity guidelines for adults with
MS developed through a rigorous, multi-step
process that meets international standards for
guideline development.
Following these guidelines can improve
aerobic endurance and muscle strength
among adults with minimal to moderate FOR
SUMMARY OF THE
disability resulting from either relapsingremitting
or progressive forms of MS. Meeting
these guidelines may also reduce fatigue,
improve mobility and enhance elements of
health-related quality of life.
Currently, there is no scientific evidence
that following these guidelines will result in
relapse of MS symptoms or worsen fatigue
or health related quality of life. A summary
of the guidelines is provided below.
To view the full guidelines and for more
2012 SCIENTIFIC STATEMENTS
information, visit csep.ca/guidelines or
mssociety.ca/physicalguidelines ■
Canadian Physical Activity Guidelines
FOR ADULTS WITH MULTIPLE SCLEROSIS
24
24
24
Guidelines
To achieve important fitness benefits, adults aged 18-65 years with multiple
sclerosis who sum have audaeseque mild to nonsequ moderate aspidit et disability que natae cuptatqui need rent at doluptum least: voloribus rerersp elictum ut
et landem qui cusapic ipient audaerestint exerecae labo. On cum voluptatus andi doloria spienda nam
• 30 minutes eos of mos moderate doloriam fugias intensity debit, occullenim aerobic autas plis activity, etur aut plabores 2 times et omnime per week, occulparci utatest
AND
accaboresti culluptiisci re, sequiatur? Ximin num id que voleces dolupta estrumet aruntisciam reratur as
• Strength training exercises for major muscle group, 2 times per week.
Meeting these guidelines may also reduce fatigue, improve mobility and enhance
elements of health related to quality of life.
Let’s talk intensity!
Canadian Physical Activity Guidelines
Preamble
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quuntur?
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Guidelines
• Moderate-intensity physical activity
is usually a 5 or 6 on a scale of 10
and causes your heart rate to go up
• Pick a resistance (free weights, cable
pulleys, bands, etc.) heavy enough
that you can barely, but safely, finish
10-15 repetitions of the last set
• Repetitions are the number of times
you lift and lower a weight
Important things to know
• Rum quae vendi dolorep erferuptate eturem que am, tore volendae nulpa
volori sus at ent ullupti quamus, velitis earit expelecus.
• Aerobic and strength training
activities can be done on the
same day
• Rest your muscles for at least one
day between strength training
sessions
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© Canadian Society for Exercise Physiology, 2012. All rights reserved.
For more information
please go to …
www.csep.ca/guidelines
ms canada Fall/Winter 2012 9

ms canada Fall/Winter 2012 10
Research is hope: The Decker family
Bob and Pat Decker with Dr. Jiwon Oh
Dr. Jiwon oh,
winner of the Decker
Family endMS
Research and
Training Network
Transitional Career
Development Award
When Bob Decker’s wife, Pat, was
diagnosed with relapsing-remitting
multiple sclerosis in 1989, he took action
by raising almost $10,000 for his local MS
Walk. Over 20 years later, Bob remains an
active member of the MS Society – and his
generous gift of $500,000 to the endMS
campaign will fund the Decker Family endMS
Research and Training Network Transitional
Career Development Award for a young
postdoctoral fellow.
For Bob and his family, research means hope
for a cure. Bob feels donations to research
will have long-term benefits for people living
with MS. “While it may be frustrating not to
see an immediate impact, I think research
fosters hope,” Bob says. “Researchers
pursue avenues without knowing a definitive
outcome, but there is outstanding value in
their potential and the hope they provide.” ■
Dr. Jiwon Oh of Johns Hopkins University is
the recipient of the Decker Family endMS
Research and Training Network Transitional
Career Development Award. Her research uses
advanced MRI techniques to determine how
spinal cord lesions, a common problem in MS,
cause sensorimotor deficits.
“This support is invaluable to young investigators
like me,” says Dr. Oh. “It provides us with
material and educational support to pursue
academic goals that will make a contribution to
the field of multiple sclerosis.”
The award is supported by a gift of $500,000
from the Decker family to the endMS
campaign. ■

Lacey Andreas inspires the movement to end ms
Lacey
Andreas, A&W
Cruisin’ for a
Cause
inspirational
champion
Lacey Andreas, inspirational champion
for the 2012 A&W Cruisin’ for a Cause
campaign, understands the unpredictability
of multiple sclerosis. “I’ve learned to listen
to my body,” says Lacey, who, as a personal
trainer, uses diet and exercise to help manage
her symptoms. Now more than ever, Lacey is
hopeful for a future free of MS and is passionate
about research that will help improve quality of
life for people living with the disease.
listening to People Affected
by ms: We want to hear from you
The MS Society has launched the
Listening to People Affected by
MS initiative, which aims to hear from
Canadians affected by MS about their
quality of life priorities, needs and
barriers.
The MS Society of Canada’s mission is
to be a leader in finding a cure for MS
and enabling those affected by MS to
enhance their quality of life. We want
to hear directly from you about the
realities of your day-to-day life. What
are your priorities when it comes to
living well with MS? Are there barriers
that prevent you from living a full life?
What supports are most helpful? What
are your biggest worries?
On August 23, more than 750 A&W
restaurants across Canada opened their doors
for the fourth annual Cruisin’ for a Cause
Day. Over the summer, the campaign raised a
record total of $1.25 million for research and
services for people living with MS. Every year
A&W franchisees look forward to engaging
with their community on Cruisin’ for a Cause
Day, when one dollar for every Teen Burger ®
goes to the MS Society.
“Big events like Cruisin’ for a Cause fund
research that will have a real impact on
the lives of people with MS down the line,”
Lacey says. “People with MS need this kind
of support so they can eventually see a real
difference in their everyday lives.”
You can still donate to the A&W
Cruisin’ for a Cause campaign. Visit
cruisinforacause2012.ca to find out how. ■
Have your voice heard through an anonymous,
nationwide survey, and help inform the programs,
services and advocacy decisions that we make as
an organization.
We want to hear from:
• those living with a diagnosis of MS;
• those waiting for a diagnosis with respect
to MS;
• close friends or family members of
people with MS;
• caregivers of people with MS.
Visit mslistening.ca to take the survey online.
To request a paper copy of the survey, call
1-800-268-7582. If you request a paper copy,
you will have the option of sharing your responses
verbally through a dedicated toll-free number. ■
ms canada Fall/Winter 2012 11

stay in the know. For the
most current information
on ccsVI, visit ccsvi.ca
2012 ecTRIms congress:
Access live coverage
The MS Society of Canada has partnered
with the National MS Society in the United
States to connect the MS community
with researchers who attended the 2012
European Committee for Research and
Treatment in Multiple Sclerosis Congress.
Access videos and highlights from the
conference, which took place in Lyon, France
in October.
Visit blog.nationalmssociety.org for English
coverage or sP-ectrims.blogspot.com for
French coverage.
CANADA
Share your comments:
mscanada@mssociety.ca
Fall 2007
Update your mailing address or subscription
preferences by contacting your division office.
Division contact information can be found at
mssociety.ca or call 1-800-268-7582 or email
info@mssociety.ca. To view this publication
online, visit mssociety.ca/mscanada
FPo
“I’m getting benefit from research now, and
hopefully our estate can help people down the road.”
~ Marion & Martin, British Columbia
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