VOLUME 40 • NUMBER 138
SPRING / SUMMER 2015
3
PORTRAIT OF AN EMINENT RESEARCHER
FROM THE EASTERN TOWNSHIPS
4
PROGRESSIVE MS
9
DEBBIE LYNCH-WHITE:
DEDICATED!
Message from
the Executive Director
Each year, in every corner of Quebec, we
get the chance to mingle with you at our
numerous fundraising events and the
various service activities that are offered
to you. You know all about our events
and participate actively in them, and we
witness your undeniable support for the
cause. In parallel with all this vibrant
activity, many members of the big MS team
are working patiently to advance the
important files aiming to improve legislation,
policies and practices that will foster a
better quality of life for people affected by
multiple sclerosis.
MS Quebec • SPRING / SUMMER 2015
These efforts often unfold in the shadows and
they generally bear fruit only after long months,
or even years, of development and follow-up
with government officials. Thus, what we call
“social action” and “government relations” are
the result of long-term work and reflect an
exceptional ongoing partnership among several
social actors: community workers, the medical
world, the local chapters, the office of the Quebec
Division, and the many generous volunteers who
are determined to change the course of events
and promote the full inclusion of people affected
by MS in all areas of life.
2
ISSN: 0822-5702
Published by: Multiple Sclerosis Society
of Canada, Quebec Division
550 Sherbrooke St. West, East Tower
Suite 1010, Montreal, Quebec H3A 1B9
Tel.: 514 849-7591 or 1 800 268-7582
Fax: 514 849-8914 or 1 877 387-7767
E-Mail: [email protected]
Website: mssociety.ca/qc
This year, we continued to be very active in
delivering our messages to decision-makers. A
position paper was submitted to a parliamentary
committee on the living conditions of adult
residents of long-term care facilities and the
need to find alternative housing resources for
them. Lucie Charlebois, the Quebec Minister
for Rehabilitation, Youth Protection and Public
Health, is aware that the current system must
be improved so it can better meet the needs of
adults with declining autonomy. The financing
of multiple sclerosis clinics, which are in a
precarious situation, is another issue that our
“silent spokespeople” have moved forward, as
is the adaptation of employment insurance and
access to tax credits for family caregivers.
There are numerous issues related to multiple
sclerosis, and our elected officials need to be
made aware of them so they can understand
them better. Here in the MS Society, we commit
to do our utmost to ensure that they will show
solidarity with our cause. MS
Louis Adam
Editor: Catherine-Eve Roy
Assistant Editor: Soline Le Martret
Executive Director: Louis Adam
Legal Deposit – Bibliothèque et Archives nationales
du Québec, 1989
Legal Deposit – Library and Archives Canada
Thank you to all our collaborators.
Désirez-vous recevoir votre revue en français ?
Composez le 514 849-7591 ou le 1 800 268-7582.
Member of:
Interview with
Dr. Denis Gris
Dr. Gris, Assistant Professor of Neuroscience
and Immunology at the Université de
Sherbrooke, has set up his own laboratory
to explore the processes involved in
neurodegeneration and neuroinflammation.
Dr. Gris, why did you become interested
in MS?
Is it important to you to meet people who
have MS?
Yes. I always participate in the MS Walk with my
family so that my children will understand that
society has problems we need to deal with.
That is what the MS Society does, and it’s thanks
to the Society that I’ve been able to conduct
my research projects.
What, exactly, does your research involve?
Our hypothesis is that the central nervous
system calls upon internal mechanisms that can
prevent activation of the immune system. We
are currently studying two molecules that may be
able to counteract inflammation in the brain and
spinal cord. In the coming months, we will test
various pharmacological reactives that may
enhance the action of these molecules and thus
be used to treat MS.
Doctor Gris and his team.
Émilie Imbeault, Tara M. Mahvelati,
Virgini Bertrand-Lehouillier and Denis Gris.
What is the main difficulty in advancing
knowledge about MS?
From my standpoint as a research scientist, the
biggest obstacle is the difficulty of obtaining
funding and recruiting engaged students, despite
the labour market downturn in the research sector.
What do you think the coming decade has
in store for us in terms of MS research?
I believe that MS researchers will continue to
explore T and B lymphocyte mechanisms. They
will also take a closer look at other cell types.
In fact, my collaborators and I have begun some
very interesting investigations of astrocyte
biology relative to MS. A number of potential
MS treatments based on changes in intestinal
homeostasis have already been suggested as well.
We have not yet found a cure for multiple
sclerosis, but I feel that we have made
tremendous progress and that it will continue.
MS
MS Quebec • SPRING / SUMMER 2015
I have always been fascinated by the interactions
between the nervous and immune systems.
I firmly believe that these interactions are
reciprocal and that we will soon find the
mechanisms that different cells in the central
nervous system use to control the action of the
various immune cells.
3
Progressive MS:
The Latest News
There are 10 treatments that can slow
down the progression of the relapsingremitting form of MS and the frequency
of attacks, but they are not effective
for progressive MS. Nevertheless,
research is more active than ever.
Some 15% of cases of MS start with the
primary-progressive form. The other
85% are diagnosed with the so-called
relapsing-remitting form; in more than
half of them, it changes into the secondaryprogressive form within 10 to 20 years
of the initial diagnosis. Moreover, in 2009,
a study carried out by Harvard Medical
School in Boston revealed that smoking
cigarettes not only increases the risk
of developing MS but contributes to a faster
transition to a progressive form.
Unlike relapsing-remitting MS, where
symptoms take the form of attacks followed
by periods of remission, progressive MS is
distinguished by a gradual, continuous
deterioration of certain parts of the central
nervous system. Today, it is urgent that
the medical community mobilize to finally
discover treatments for these forms of the
disease and thereby make life easier for
people who have them and their families.
MS Quebec • SPRING / SUMMER 2015
Let’s take a look at the advances in 2014.
4
In February last year, we got really good
news. On one hand, the MS Society and
the MS Scientific Research Foundation
announced a $3.6-million grant to finance
research on the role of B lymphocytes
(a type of white blood cell) in the onset and
progression of MS. Although, MS lesions
had previously been attributed to
T lymphocytes, it was observed that
treatments targeting B lymphocytes resulted
in a remarkable improvement in people
with MS. Moreover, the presence of
B lymphocytes was detected in the brain
regions associated with progressive forms
of MS. Thus, the grant will make it possible
to focus scientific expertise on this kind
of white blood cell and understand its role
in the disease.
At the same time, the same organizations
awarded a $3.8-million grant to Dr. Peter Stys
of the Faculty of Medicine, University of
Calgary, to finance research work into the
complex interaction between degeneration
and inflammation of the nervous system
in people with MS. The study, which is
currently under way, could make it possible
to determine what mechanisms trigger
the appearance of lesions associated with
progressive MS and, in the long run, find new
treatments for this form of the disease.
In March 2014, the results of a phase II clinical
trial of the effectiveness of the drug simvastatin
in people with progressive MS were published.
The findings revealed that the drug has positive
effects on brain atrophy (43% reduction)
and disability resulting from progressive MS.
This encouraging report justifies the start of
a phase III trial.
October 2014 saw the launch of a study
financed jointly by the MS Society and
the Centre for Drug Research and
Development (CDRD). The aim of this
study is to understand the mechanisms
whereby brain inflammation leads to
an alteration in tissues and how they can
be repaired in people with progressive MS.
Tests will be carried out to change the
brain microenvironment so that it can
resist the consequences of inflammation
and foster repair.
In addition, a research team headed
up by Dr. Amit Bar-Or, of McGill
University, highlighted a biomarker
that makes it possible to identify
people with primary-progressive MS
(10% to 15% of people with MS)
who are likely to benefit from
immunomodulatory treatment.
These results could allow treatments
to be optimized on the basis of
different patient profiles.
Finally, Gilenya, a drug used for
relapsing-remitting MS, has proven
ineffective in treating the primaryprogressive form. Tysabri is now
being evaluated for the secondaryprogressive form; the results should
come out this year.
Although there is currently no
effective treatment for progressive
MS, advances in research and
the mobilization of the scientific
community lead us to believe that,
in the near future, treatments will
be available to improve the quality
of life for people with this form of
the disease. Now more than ever,
we can allow ourselves to hope. MS
In accordance with the advances in and objectives of
scientific research, the Multiple Sclerosis Society of
Canada has defined progressive multiple sclerosis as one
of its top priorities for research in its 2014–2018 strategic
plan, Action to End MS. Thus, in the coming years, the
MS Society undertakes to do all it can to speed up
research aiming to perfect new treatments for people
with all forms of MS, including progressive forms. MS
So you weren’t able to attend the second Quebec Summit on
Multiple Sclerosis, held in Boucherville on September 27, 2014?
Or maybe you were there but you’d like to refresh your memory
of all the fascinating presentations on research and the latest
advances in the field of MS? All the videos of the presentations
are available online: just go to mssummit.ca, and then
the “Program” tab. MS
MS Quebec • SPRING / SUMMER 2015
The Quebec Summit on Multiple
Sclerosis as if You Were There!
5
A Family Event That
Shouldn’t Be Missed!
Last September, I got good news: we had
won free admission to the Congrès Espoir
famille. The news made us really happy and
the whole family was full of enthusiasm
when we went to Sherbrooke.
I didn’t know what to expect, but I was hopeful…
Right from the moment we walked in, I felt at
home, and the pressure of living with a disease
that is invisible to most people for now fell
away from me. I had the right to be myself with
multiple sclerosis.
During the icebreaker, we received the best gift
imaginable: we met another family that lives
nearby and is experiencing the onset of this
disease in a similar way. As we moms, husbands
and kids got to know each other, I think a true
friendship was born.
We learned so much during the conference, from
the presentations and information stands, but
above all from the discussions.
MS Quebec • SPRING / SUMMER 2015
The kids’ activities were a huge help to my two
daughters as they were able to chat with other
kids without feeling that they had to explain
themselves. Talking for the sake of talking, talking
to understand better, talking to express their
feelings, but above all, talking while having fun.
They’re already impatiently awaiting the arrival
of their first magazine and dreaming about
the possibility of attending the summer camp.
I have a sense that they want to be active in
the new reality created by the arrival of multiple
sclerosis in my life and theirs.
6
The Farley-Bélanger family.
Nina Bélanger, Christian Farley,
Emma Farley and Frédérique Farley.
We would like to thank you: by giving us the free
admission, you accompanied us on our path as we
learn to live with multiple sclerosis. We would also
like to take this opportunity to thank all the
organizers of the conference. Nina Bélanger MS
The Quebec Division of the MS Society thanks
the sponsors of the 2014 Congrès Espoir
famille: Biogen Idec, Genzyme, Novartis,
Teva Canada Innovation and the Fondation
Jacques-F. Gougoux.
The 24th Congrès Espoir famille will be
held in the Bois-Francs region, at the
Hôtel le Victorin, in Victoriaville, from
October 23 to 25, 2015. In French only.
To find out more and to register, visit
scleroseenplaques.ca/qc/espoirfamilleEn.htm
or contact Mylène Huet at 1 800 268-7582.
NOTICE
– Annual general meeting of the Multiple Sclerosis Society of Canada,
Quebec Division, for the fiscal year running from January 1 to December 31, 2014
Among other things, the agenda will include the proposal of new general by-laws
for the Multiple Sclerosis Society of Canada, Quebec Division.
Date: April 11, 2015, from 11 a.m. to noon / Place: Hôtel Le Victorin,
19 Arthabaska Blvd. East, Victoriaville, Quebec G6T 0S4 / Please confirm your attendance
by April 3, 2015: [email protected] or 1 800 268-7582. MS
A Free
Summer Camp for Kids!
I’m the mom of an 8-year-old boy who had
a chance to take part in the MS Youth Camp.
It was the first time that Matis spent such
a long time at camp.
A week later, when I picked up my son, his
eyes were sparkling, his head was full of images,
songs and stories, and his heart was brimming
with new friendships and all the attention
he was given at camp. Matis was aglow, body
and soul, and his mom was delighted to witness
his overflowing happiness! At camp, he had
experiences he’ll remember for the rest of
his life.
MS Youth Camp is offered in French only to
children and teens aged 7 to 17 years who have
a parent with multiple sclerosis. Campers take
part in various recreational activities, as well
as MS-related activities. Camp allows them to
share their experiences with other kids who
are living in similar situations and to better
understand their parent’s disease while still
having fun.
Matis at MS Youth Camp.
MS Youth Camp is free of charge. For a chance
to be selected, kids must send to us a letter
or drawing explaining their motivation for
participating in the camp by April 25, 2015.
For more information, visit campsp.ca or
contact Carole Corson at 1 800 268-7582.
MS
MS Quebec • SPRING / SUMMER 2015
Being away from home for a week also gave
him autonomy and maturity, which are very
helpful for a mom with low energy levels.
The workshops on MS were very beneficial in
helping him understand the implications of
the disease and its symptoms. When Matis came
home from camp, he told me that he wanted to
learn more about my disease and he now pays
more attention to the signs that I’m low in
energy. He also shows real open-mindedness
and heartfelt generosity to a close friend who has
MS and is in a wheelchair. His attitude has
changed for the better: he no longer sees the
disease as an obstacle but simply as part of his
daily life. Ariane Belval MS
7
CAREGIVERS’ COLUMN
Yes,
You Can Travel!
The Accessible Road is an online resource that
was created in 2006 by Kéroul for people with
disabilities or physical limitations who want
to get out and explore Quebec. It is a travel
planning tool. The Accessible Road covers
17 regions of Quebec and suggests over
250 accessible tourist sites. The establishments
mentioned in The Accessible Road meet the
standards for barrier-free design set out in
Quebec’s Construction Code.
This resource will enable you to find tourist
information (accommodation, orthopedic
services, adapted taxis, charter transportation,
and gas stations with services) based on
your interests and the region in question:
agrotourism, museums, gardens, entertainment
venues, birdwatching, etc. There’s something
for everyone – or almost!
MS Quebec • SPRING / SUMMER 2015
To plan a trip or an outing, you first need to
carefully assess the abilities and limitations
of the person with MS who will be travelling
with you. You can then choose your destination
based on your tastes and budget. You might
8
Photo Credit: TQ/M. Julien
Summer is getting closer every day.
Do you want to get away with someone
who has multiple sclerosis? Do you
wonder if it’s even possible? Then take
a look at The Accessible Road.
find it useful to visit chat forums, blogs and
accessible travel websites to check travellers’
comments. It is recommended that you make
your hotel reservations before you leave so
you can be sure of obtaining an accessible
room and explain any special needs your partner
with MS may have. You should plan your itinerary
in advance, since many roads may lead to the
same place but some of them will be more
accessible than others. You can also consult a
Kéroul travel agent for help.
For more information
Kéroul: 514 252-3104, [email protected]
and keroul.qc.ca
Link: larouteaccessible.com/en
Bon voyage!
MS
Check Your Mailbox!
Starting next fall, you’ll receive a brand-new publication from the MS Society that will
take over from both MS Quebec and MS Canada. While continuing to bring you news about
the Quebec Division’s local activities, this new magazine will also give you a fuller view
of advances in research across Canada, as well as events, announcements and news from
the national MS community. MS
SPOKESPERSON FOR THE MS WALK
Debbie Lynch-White:
Dedicated!
Effervescent Debbie Lynch-White contributes
her energy and positive approach to the
cause! Although the talented actor had been
won applause in several stage plays over
the years, it was the role of Nancy Prévost
in the TV series Unité 9 that propelled her
into the limelight in 2012. Let’s meet the
real Debbie…
When someone asks her who she is, Debbie
defines herself above all as (too) generous and
authentic: “I love people. And when I love,
I love without counting the costs. I’ve always put
other people’s happiness before my own.” The
actor probably owes her caring nature to her
past history.
Debbie’s father was diagnosed with MS when
she was only 14 years old. From that time
on, she made an effort to accompany and care
for her dad, who is now deceased. Debbie, who
already wanted to be an actor, knew then that
if she ever became famous, she would use
her fame to support the cause of MS: “I asked
myself: What causes would I get involved with?
Of course, my number one choice was MS,
because it had quite simply changed my life.
I wouldn’t be the same person if I didn’t have
my experience with this disease.” So when
she was asked to be the spokesperson for the
MS Walk in 2014, Debbie didn’t hesitate for
a moment.
Debbie
Lynch-White and
François Coupal
during MS Walk
2014.
Above all, Debbie is motivated by hope. After
living so closely with the disease, she understands
that it’s essential to support research so that
the confusion surrounding MS can finally be
cleared up and people with the disease and their
families can get answers: “In the end, we’ll
know and we’ll find a cure. The more we get
involved and give our time, while creating positive
energy together, the quicker we’ll get results.
Our mission is to raise as much money as possible
for research and get the event talked about in
the media so that one day there won’t have to be
an MS Walk.”
The message that Debbie wants to share with
people with MS and their families is positive and
encouraging: “You’ve got two choices in life:
be fun or be boring. I’d tell them to always try to
go for the fun to light up a life that can sometimes
be chaotic and difficult: rejoice in each small
triumph and appreciate the little joys.” MS
MS WALK
On May 24, 2015, if you participate in one of the 20 MS Walks
around the province, you’ll be joining thousands of Quebecers
and expressing solidarity with people affected by MS. It’s an
opportunity to mobilize and get actively involved in an event in
which you’ll experience some unforgettable moments! With a
route that’s accessible to everyone, this inspiring, family-friendly
activity combines good times with good deeds. Find a Walk in
your community at mswalks.ca. MS
MS Quebec • SPRING / SUMMER 2015
Every step tells a story
9
Sophie Thibault:
Riding 1,220 km in Four Years
to Honour People with MS
Did you know that there’s a connection
between motorcycles and the MS Society?
It’s an event where you and your
pals can ride 300 km for the cause of
multiple sclerosis.
Sophie Thibault with participants
in the 4th Tournée de l’espoir
at Boutique Moto Internationale.
During the fifth Tournée de l’espoir, I’ll have
the privilege of riding with 100 motorcyclists!
It will be a fun day of sharing with others.
On May 30, 2015, you’ll be able to enjoy an
impressive route in one of Quebec’s most beautiful
regions: the towns we’ll ride through include
Sainte-Béatrix and Saint-Jean-de-Matha, and we’ll
celebrate our grand finale in St-Alexis-des-Monts,
where we’ll get a warm welcome!
the Tournée de l’espoir has raised almost
$400,000 for the MS Society since it was
launched! Every year, I’m moved to hear so
many stories of hope and witness the
outstanding generosity of the participants
who respond to our invitation!
I’m really proud of being the instigator and
ambassador of this annual event. My mother,
Monique, was a huge inspiration; in fact,
she’s the reason for my commitment. She
suffered from multiple sclerosis symptoms
for 52 years, and my participation in the
Tournée de l’espoir enables me to honour her
and everyone else who has this disease.
I invite everyone who loves motorbiking
to join us and support people with multiple
sclerosis and their families.
MS Quebec • SPRING / SUMMER 2015
Thanks to the perseverance of our fantastic
organizing committee, our participants’
involvement and support from our partners,
10
Pass the word to everyone you know!
It’s a friendly, original way of supporting the
MS Society.
See you at the finish line?
tourneesp.ca
RBC Golf Challenge for MS
At the 20th RBC Golf Challenge for MS, dedicated golfers will
be able to take possession of the course for a whole day as they
accept the challenge of playing 100 holes of golf or 250 strokes!
On June 28 and 29, 2015, why not join in this high-level sports
event at the Château-Bromont, Royal Bromont and Parcours du
Vieux Village golf courses to support people with multiple sclerosis?
Register now, at defigolfsp.ca. MS
MS
Get Your
Hands Dirty!
It’s rejuvenating, it’s refreshing, it gives
you smooth skin, it’s relaxing… Yes, mud
has many benefits. So don’t hesitate to join
us this summer on the Muck MS Canada
obstacle course and take up the challenge
of getting dirty for a good cause!
After its huge success in Quebec City in 2013,
Muck MS Canada doubled up in 2014 and
bespattered participants in the Eastern Townships
as well. The result was a record number of more
than 5,000 participants in the two regions, as
well as $330,000 raised to finance MS research
and services!
This year, let’s make a date for August 8 in
the Eastern Townships and August 29 in
Quebec City for this 5-km race, which will have
you crawling, jumping, sliding, and most of all,
getting covered with muck as you clear the many
obstacles in your way! Whether you’re alone or in
a team, a fierce competitor or a kid, in costume or
not, the Muck MS Canada experience is for you.
Your only obligation (do we even have to say it?):
don’t avoid the mud!
Are you interested in this adventure? Then
hurry: if you register for Muck MS Canada
before March 31, it’s only $55! Visit
totalebouette.ca for all the practical
information, as well as training tips that will
help you prepare for an obstacle course that
should be… good dirty fun! MS
More than 1,000 cyclists are expected in
the Lower Laurentians on August 29 and 30.
All the energy and determination they show
every year will be channelled into a single
event with a single goal: supporting the
cause of MS.
Thanks to the dedication of numerous volunteers,
the support of our generous partners, and of
course the active involvement of all the cyclists,
the Medavie Blue Cross MS Bike is positioned
as a high-quality cycling event that has raised
no less than $17 million for the cause of MS since
it was created. The variety of routes on offer will
let you choose a challenge you feel comfortable
with from among over 20 itineraries ranging from
75 to 150 km a day!
Participating in the 2015 Medavie Blue Cross
MS Bike couldn’t be easier: just go to msbike.ca.
And don’t forget to check out the “Vélotour SP”
Facebook page (in French) to keep up with our
exclusive promotions and all the latest news.
All you’ll need then is your bike and a good mood!
See you very soon… MS
MS Quebec • SPRING / SUMMER 2015
The 2015 Medavie Blue Cross
MS Bike will be a single event
on a single weekend to bring
everyone together!
11
Upcoming MS Events
April 26, 2015
From May 7 to
May 9, 2015
May 24, 2015
May 29, 2015
May 30, 2015
June 20, 2015
June 28 and 29,
2015
August 8, 2015
Eastern Townships
August 29, 2015
Quebec City
August 20, 2015
A&W Cruisin’
to end MS
August 29 and 30,
2015
From
September 12
to September 22,
2015
September 19,
2015
October 2015
From October 2
to October 24,
2015
From October 19
to November 2,
2015
Multiple Sclerosis Society of Canada
Quebec Division
550 Sherbrooke St. West, East Tower, Suite 1010
Montreal, Quebec H3A 1B9
Return Postage Guaranteed
Address Correction Requested
40011261
Volunteers Needed
The MS Society is currently looking for volunteers
for our various fundraising events and different
administrative duties. Visit mssociety.ca/qc to
obtain the contact information of the office closest
to you. Your contribution is essential to the success
of the MS Society’s events.
Thank you for your help!
MS