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Tournée de l’espoir – For Monique and Sophie Thibault

Message from the Executive Director

Summer is already coming to an end, leaving us with

wonderful memories of all of this summer’s events. I would like to take this occasion to thank all the participants, donors, volunteers

and employees who worked like busy bees in a hive to celebrate the extraordinary spirit that makes us so devoted to our cause.

All this work will enable us to give more money for research and to increase our contribution to the various advances that hold the promise of a better quality of life for people with MS.

Moreover, following our investments and those of the U.S. MS Society in seven studies on CCSVI, in late June the Government of Canada became the first government in the world to announce the launch of a clinical trial. In this issue, you will find a summary of the procedure for such trials. It takes patience. But we all know that it is thanks to the answers provided by scientific research that we will learn more about this hypothesis, which has raised so many hopes.

I encourage you to share your comments or experiences on the ccsvi.ca portal. In addition, you will find regularly updated information on

the various studies funded by the MS Society at mssociety.ca.

To follow our activities and find out more about a wide range of interesting topics, don’t hesitate to visit the Quebec Division’s website at mssociety.ca/qc.

Enjoy this issue!

Louis Adam

by Louis Adam, Executive Director

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ISSN: 0822-5702Quarterly published by: Multiple Sclerosis Society of Canada, Quebec Division 550 Sherbrooke St. West, East Tower Suite 1010, Montreal (Quebec) H3A 1B9Tel.: 514 849-7591 or 1 800 268-7582Fax: 514 849-8914 or 1 877 387-7767E-Mail: info.qc@mssociety.caWebsite: mssociety.ca/qc

Editor: Lucie BilodeauAssistant Editor: Marie-Eve OuelletExecutive Director: Louis AdamLegal Deposit – Bibliothèque et Archives nationales du Québec, 1989Legal Deposit – Library and Archives CanadaThank you to all our collaborators.Désirez-vous recevoir votre revue en français? Composez le 514 849-7591 ou le 1 800 268-7582.

Pediatric multiple sclerosis (MS) is a childhood neurological

illness that has received a lot of attention in recent years. While MS is often thought of as an adult disease, up to 5% of people with

MS are diagnosed before the age of 18 and up to 10% of patients recall having had an attack of MS in childhood (Venkateswaran & Banwell, 2010). While early recognition and treatment is important and age appropriate, child-centered care needs to be provided to children with MS, planning for their eventual follow-up as adults also needs to occur.

Adolescents with MS approaching adulthood need to build skills in self-management of symptoms, initiate and maintain treatments, make education and career choices and achieve developmental tasks independently. Research evidence supports a multidisciplinary team approach to transition rather than transfer of adolescents and young adults with chronic physical and medical conditions moving from pediatric to adult care systems. At the McGill University Health Centre, a cross-sited team of pediatric and adult MS specialists have developed a coordinated program to transition

adolescents from the pediatric to adult MS program, with the support of a hospital transition advisor. The goal is to provide care prior, during and after transition, rather than at the point of transfer, standardizing care practices and communication between teams and facilitating new therapeutic alliances for patients and families. This program helps to overcome many common concerns that adolescents and their parents have regarding the transition to adult care – the lack of familiarity with adult sites and systems, knowing who to call if they need help and a feeling that they are “starting from scratch” as they move to a new place.

This novel program has provided a way to ensure that transition occurs by design rather than by default for adolescents with MS and their families. So far, the feedback has been very positive!

Growing Up With Multiple Sclerosis – Transitioning from Pediatric to Adult Care

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by Diane Lowden, Clinical Nurse Specialist, N.MSc(A), MSCN

Tools for you!The MS Society has some tools specifically for young people who have MS. The someonelikeme.ca website, a new initiative, invites you to connect with other young people from across Canada who are experiencing the same issues you are facing. You can submit your ideas and stay better informed about MS. It will also be possible for you to watch an informative online video about MS. Ask for information on 2012 summer camps today! Also, young people can apply for postsecondary scholarships awarded by the MS Society. You will find more information about these tools at scleroseenplaques.ca/qc/YoungMS. Feel free to share your experience and make your voice heard!

We are looking for a blogger for the someonelikeme.ca site. If you are interested in having a new experience, write to

carole.corson@scleroseenplaques.ca.

HEY!

Michel Chaurette’s life changed in 1987, when he

was diagnosed with relapsing-remitting multiple sclerosis. His MS evolved to the secondary progressive form in the late 1990s.

Since 1982, when he experienced his first symptoms, the disease has been progressing gradually. But MS doesn’t stop Mr. Chaurette from playing an important role in his region and fighting for the rights of people with disabilities.

After he was diagnosed with multiple sclerosis, Mr. Chaurette decided to join the MS Society’s Sorel-Tracy Chapter. “I wanted to get involved so I could learn more about multiple sclerosis, not only for my own sake but for other people as well.” He now holds the position of treasurer on the chapter’s board of directors. He has witnessed progress in research, and recent studies give him hope, but in the same breath he points out, “we still haven’t put our finger on the problem.”

In 2007, an accident, combined with the progression of his multiple sclerosis, left Mr. Chaurette wheelchair-bound. That’s when he joined the Association des personnes handicapées de Sorel-Tracy, of which he is now chairman of the board. Today, in 2011, he’s still just as active as ever. His activities to

make elected officials and local merchants more aware of the needs of people with disabilities give him hope that improved accessibility will be a reality. Moreover, he asserts, “with the city’s [Sorel-Tracy] 2011 action plan, we’re making progress.”

What motivates him to get involved? Helping people in their daily lives and seeing all the advances that have been made in his region. Mr. Chaurette is a perfect

example of a volunteer who uses his own situation and experience to contribute to the well-being of his peers. He concludes by saying, “We need people like

me who will help out. I still have the energy to do it… less than I used to have, but I still have some!” That’s energy that he uses to help other people—and everyone appreciates that!

Michel Chaurette: Getting Involved to Help Others

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Michel Chaurette, treasurer of the MS Society’s

Sorel-Tracy Chapter

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“I like to get socially involved to help people

with disabilities.”

Legacy giving allows generous donors to make a gift of hope for future generations.A legacy gift, or planned gift, is the promise of a future donation. Usually, the gift takes the form of a bequest in the person’s will, but it may also be a gift of

life insurance, a gift of securities, a charitable gift annuity, etc. People who make a legacy gift can decide on how their gift will be used. They also receive certain tax benefits. The MS Society created the Evelyn Opal Society to show its gratitude to legacy donors.Visit the brand new website at mslegacy.ca to find out more about the different possibilities for legacy giving, or contact Annie Brault, at 514 849-7591, ext. 237, or annie.brault@scleroseenplaques.ca.

by Marie-Eve Ouellet

Sixty young people from age 7 to 15 participated in one

of two MS Summer camps held this year at Camp Richelieu Saint-Côme in Lanaudière and at Camp Edphy International

in the Laurentians. The camps were provided free of charge through the financial support of the Fondation Club Richelieu Montréal, the Alcoa Foundation and the CIBC. Some of the comments we received are provided below.

“The children really enjoyed their week. Thank you so much. It was a great opportunity for them!” Maude Rachel’s and Thomas Jeff’s father

“Thank you very much for giving Frédéric the opportunity to stay at this super-duper camp for a week. He came back more grown up and with many memories that he will keep his whole life.” Frédéric’s mother

“I think the camp was really super cool and I’m glad that I was able to learn more about MS.” Maryanne

“The camp was really hot, cool and fun!” Myriam

“I learned a lot about MS and I liked making friends.”Jacynthe

MS Summer Camps: Two Great Weeks Enjoyed by All!

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by Carole Corson

Summer camp for kids aged from 7 to 14 years old

Summer camp for kids aged from 9 to 15 years old

A new informative webcast on spasticity associated with multiple sclerosis has been added to our website. The five-minute webcast will inform you about the frequency of this symptom, its different variations and what can worsen it. You will find the link to the video (in French only) on our Website, in the menu on the right-hand side. We would like to thank Allergan Inc. for its unrestricted educational grant that made the production of this webcast possible.

Webcast

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Portrait of a Researcher: Dr. Jeffery Haines

Multiple sclerosis is a complex and multifaceted disease; this means that a

variety of research avenues must be investigated in order to foster the development of treatments. At present, most of the treatments targeting the disease are designed to modulate the immune system. It now appears that strategies that target remyelination and help to protect neurons could constitute the most important approaches in halting the progression of the disease. Dr. Jeffery Haines and his team are investigating this issue and, thanks to a grant from the Fonds de recherche en santé du Québec in collaboration with the MS Society, they will be able to continue their work.

Dr. Haines, who is 32 years old, first became interested in multiple sclerosis when he was an u n d e r g r a d u a t e student at the University of Guelph, in Ontario. He was fascinated by membrane biology. He went on to do his doctoral studies in pharmacology and therapeutics at McGill University, where he examined the mechanisms whereby oligodendrocytes use intracellular communication channels to favour the expression of myelin genes. His career path in the world of MS research then led him to Mount Sinai Medical School, in New York, where he now works with world-renowned researcher Dr. Patricia Casaccia. “After I met a lot of people affected by MS and learned that the prevalence rate in Canada is one of the highest in the world, I became more and more passionate about MS research.”

The goal of the study that Dr. Haines is carrying out is to better understand how the oligodendrocytes’ projections wrap around neurons to form the multi-layered myelin membrane as the nervous system grows and is repaired. In people who have MS, oligodendrocytes attempt to remyelinate axons with degraded myelin, but the process is ineffective. When the mechanisms regulating the enzymes in question are known, Dr. Haines’ team will be able to formulate strategies to

activate or deactivate them during the repair process.

The next steps of their research work are intended to better understand the functioning of these enzymes by studying animal models of MS and doing autopsy studies of the brain tissue of people with MS. If their functioning is in fact

disrupted during the repair process, the team will be able either to design small molecules or to use biological compounds that will specifically target these enzymes in order to promote tissue repair.

Dr. Haines’ work team is highly enthusiastic about their ongoing study. The combined efforts of scientists from different disciplines are advancing research in the field of MS.

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Dr. Patricia Casaccia with Dr. Haines

The health and social services network provides a wide

range of services. In your role as a caregiver, you may need to use several services, in particular home support.

ServicesCLSCs provide front-line health care, social services and home support services. You can obtain services for you and for the potential recipient: two persons, two separate files.

Steps towards applying to the CLSC for servicesReception – Your eligibility and the urgency of your request are evaluated. When urgent care is required, it is provided quickly. There may be delays for less urgent needs. Triage – A nurse sets priorities for patients. Waiting times are variable. Some CLSCs set a maximum waiting time of 30 days. Your case – The home support service team decides which professionals should be involved in your case and then conducts a home evaluation. Home visits – the “multi-clientele tool” questionnaire is used to determine your profile and situation. Intervention plan – A patient navigator will manage your file. The services and professional assistance obtained depend on the extent of

the loss of autonomy. The following services are available: nursing care, nutrition, physiotherapy, occupational therapy, respiratory therapy and psychosocial services.

Home support services also include personal assistance, domestic help services, civic services and learning assistance. CLSCs make arrangements with community organizations, volunteer groups and domestic help social economy businesses (DHSEBs) to provide home services.

Filing a complaintIf you are not satisfied with the services received from the health and social services network, you can file a complaint with the commissioner for complaints, who is appointed by the institution’s board of directors. Verbal or written complaints are accepted and will receive a written answer. An advisory committee has been formed to monitor the recommendations made as the result of complaints.

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Caregivers’ Column: Home Support

Tuesday, December 13, 2011 – Taking stock of new MS treatments and research. Guest speaker: Robert Morin, Documentation Centre CoordinatorTuesday, January 10, 2012 – Benefits of physical activity. Guest speaker: Robert MorinTuesday, February 7, 2012 – The in’s and out’s of mandates in case of incapacity, power of attorney, guardianship and curatorship. Speaker: Diane V. Adam

To sign up, call 1 866 396-AIDE (2433) or 514 485-7374 for the Care-Ring Voice helpline. You can visit our website for more details on 2012 programming.

The next telephone meetings will be held on March 13, April 10 and May 8, 2012. The topics will be posted online and will appear in the next issue of MS Quebec.

TELEPHONE MEETINGS (IN FRENCH ONLY)

by Diane Vendette Adam

What are the phases of a clinical trial?

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C linical trials for medical research usually consist of four phases. The length of a

clinical trial and the number of participants studied vary depending on the specific phase, but phases are the same for all diseases. For multiple sclerosis research, we first carry out a preliminary phase with an animal model for MS, called experimental allergic encephalomyelitis (EAE), using laboratory mice. Unfortunately, animal research does not necessarily have the same results in humans. First, we need to ensure that the treatment is safe, especially if it is an intervention or a medication that has never been tried on humans. From 10 to 100 healthy volunteer subjects participate in phase I of the clinical trials, which lasts about one

year. Then, over a period of one to three years, 10 to 100 participants who have MS help us verify the effectiveness of the treatment (or the intervention) and determine the posology. In the third phase, we focus on studying the treatment’s effectiveness by recruiting from 200 to 1,000 people who have MS. Over a period of three to five years, we compare the effectiveness of the treatment with that of a placebo or a recognized therapeutic approach. Finally, a pharmacovigilance study will allow us to validate whether there will be an unexpected risk over the longer term. We also carry out economic impact studies.

Each of the phases of the clinical trials includes a number of steps which may be similar to the following:

MS UpdatesAre you interested in research and advances related to MS? On mssociety.ca, you will find a wealth of information from reliable sources. You can read summaries of research under way in Canada (results and key facts), as well as credible studies carried out in other countries. You can also find information that may influence how people with MS handle this disease.Go to mssociety.ca; at the bottom of the home page, you’ll see the MS Updates section. Just click on View all to obtain a list of titles of the summaries.

Develop the study concept

Secure funding for the study

Prepare a protocol for the study

Protect participant (ethical and regulatory compliance)

Develop and implement the

study

Conduct and monitor the study

End the studyAnalyze study data

and interpret the results

Communicate the results

Richard Saulnier: Learning to Live with MS

by Lucie Bilodeau

Canal M, the radio station run by Vues & Voix (formerly the Magnétothèque), recently changed to better meet the information needs of people who

have functional limitations and cannot read. Canal M provides information and answers to questions that are important to people and that relate to a variety of topics: news, health, society, family, work and culture. It also deals with issues related to rights, services and useful resources. With an audience of more than two million households, Canal M is broadcast online,

on canalm.ca, and live throughout Quebec to people who subscribe to the following digital services:

Vidéotron Illico (555) – Bell (13 and 949) – Cogeco (955) – Shaw Direct (777) – Rogers Cablevision (555) – CCAP (555 and FM 93.3) – Telus (895) – Sogetel (972) – De Courcelles (972) – Lambton (972) – Télé-Int-Tel. For more information on programming, hosts and broadcasting channels, visit canalm.ca.

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When I first met Richard Saulnier, I was in my late

twenties. We were both working in communications. I found him sharp, charming, hardworking and full of humour. Twenty years

later, it seems as though we’d just seen each other yesterday. But now I know that his fatigue back then wasn’t due to overwork. In 2002, he learned that he had multiple sclerosis.

We got back in touch about a year ago. Since then, I keep being struck by what an exceptional person Richard is. Like for all of us, life has brought him its share of joys, troubles and trials. And like all of us, he has to face up to the daily choice between accepting everything that happens to him and enriching his own life and those of others or hiding away with his fears, worries and suffering. For me, Richard is a constant inspiration. Despite his disarming lucidity concerning the consequences of the progressive course of multiple sclerosis, he has learned to live day by day, dealing with whatever challenges his condition, his body and his mind may present.

Last June, an article in Lambert magazine outlined the life experiences that led Richard

to create a non-profit organization, Les Logis des aulniers. If the city of Saint-Lambert accepts the proposal to purchase the former Académie Saint-Michel, this project could pro-vide housing for people with reduced mobility and low income.

Breaking newsOn June 28, the City of Saint-Lambert cancelled the public call for proposals, claiming that the proposals presented (by several parties) did not meet their expectations. Richard is not giving up and intends to question Saint-Lambert’s City council and administration. The letter he received is rather terse and does not explain the decision.

You can read the article in Lambert magazine (in French) at the following address: magazinelambert.com/2011/06/richard-saulnierquestion-d’equilibre/.

Made-to-Measure Radio

Mr. Richard Saulnier

MS Events

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Good NewsDuring the year, the MS Society organizes a number of fundraising events to pursue its mission. In 2011, participants, donors and sponsors sprang into action once again, and the cause of multiple sclerosis remained a priority for many of them. New events were unbelievably successful (think of the Tournée de l’espoir motorbike rally and the MS Running Team), while long-time events such as the MS WALK and the RONA MS Bike Tour obtained unprecedented visibility. On the opposite page, we present a summary of the summer events. To find out more, don’t hesitate to visit mssociety.ca/qc, Special Events section, or contact us at 514 849-7591.

Thank you!Many of you contribute to our events during the year and ensure their success! You answer when we call on you and are always exceptionally generous.

To help us organize events, we have unparalleled organizing committees consisting of volunteering professionals from various sectors of activity, who are devoted to furthering the multiple sclerosis cause and do not hesitate to get their contacts involved.

Each year, the Multiple Sclerosis Society can also count on faithful volunteers who make sure that participants are well informed and equipped. Whether they give us a hand the day before the event or during the months preceding it, volunteers support our employees’ work.

No event can exist without you, the participants. Our success is thanks to you! Year after year, you register again with enthusiasm and promote our cause which you have made your own, with your co-workers, family and friends.

To accomplish all our goals and continue our mission to help people with MS, we can count on the support of our generous donors and sponsors, who contribute to the funds raised by participants or through sponsor events.

Last, but not least, we must not forget our spokespersons’ work. In addition to generously providing their time to facilitate our events, they increase their visibility by giving them media exposure.

Thank you from the bottom of our hearts!

On April 17, thousands of people braved the cold and the rain to walk in 17 cities and towns across Quebec. Hundreds more got together on June 5 in five additional cities. At the time of writing, more than $1.1 million had been raised for the cause. And these are only preliminary results as there were three WALKs on September, 11th.

We would like to salute the extraordinary contributions made by our WALKers, TeamMS, volunteers, partners and organizers.

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... MS Events

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The fifth WAMS gala luncheon was held on May 27, bringing together close to 400 guests at the Palais des congrès de Montréal. The 2010–2011 WAMS campaign raised $163,000. Our thanks go to Isabelle Marcoux, our guest of honour, to the loyal members of the organizing committee and to our principal partner, EMD Serono.

On June 11, 130 motorcyclists cruised along the roads of the Mauricie region and raised $100,000! The first Tournée de l’espoir was a rip-roaring success! Thanks to Sophie Thibault, proud spokesperson and honorary chair, who devoted herself to the event, as well as to the members of the organizing committee.

The MS Tri-Challenge took place in Mont-Tremblant on June 11. The 60 people who participated in one of the legs of the triathlon (swimming, cycling and running) raised $53,000. Thank you to our faithful partner, Novartis; the organizers of the Mont-Tremblant triathlon.

Sixty-eight golfers thronged the greens of the Château Bromont and Waterloo golf clubs on July 4 to take up the challenge of playing 100 holes in one day. The event raised $345,000 for the benefit of the MS Society. We would like to thank Dominic and Martin, the MS Golf Challenge’s dynamic spokespersons; our honorary co-chairs, Jocelyne Cazin and Richard de Carufel; the organizing committee and our generous sponsor, Qualité étudiants Vitres.net.

The Quebec Division was honoured to present Les Filles de Caleb in Montreal on April 12 and in Quebec City on July 14, for the benefit of the MS Society. The folk opera raised close to $300,000! Our warmest thanks go to the Honourable Céline Hervieux-Payette and to the Montreal and Quebec organizing committees.

Exploring the roads of the Drummondville and Gatineau regions on two August weekends, the 22nd RONA MS Bike Tour was another big success. The cyclists raised $1 350,000 for the cause! We would like to thank our spokesperson, Patricia Paquin; RONA; and all of our provincial sponsors.

All day long on August 25, A&W restaurants across Canada joined forces with the MS Society, donating $1 for every Teen Burger sold. Before the big day, a social media campaign (Twitter, Facebook and text messaging) encouraged people to contribute in different ways. Thanks to all the A&W franchises in Quebec and to all the volunteers who made this day possible!

Rendez-vous A&WAugust 23, 2012

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MS 2012 EventsM

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Société canadienne de la sclérose en plaques Division du Québec 550, rue Sherbrooke Ouest, tour Est, bureau 1010 Montréal (Québec) H3A 1B9

Port de retour garanti Service de correction d’adresse requis

40011261

Departure: January 7, 2012 Departure: February 11, 2012

April 29, 2012June 3, 2012

September 9, 2012

MS Running Team

April 2012

May 3-6, 2012May 2012

MS Awareness MonthMay 2012

Annual luncheon gala

June 2012 July 2, 2012

August 18 and 19, 2012

Québec cityAugust 25 and 26,

2012 Trois-Rivières

Departure: August, 25, 2012 Departure: October 7, 2012