pOrtrAit OF A reSeArCHer: dR. JOrGe iVAn AlVAreZ

QueBeC Summit On multiple SClerOSiS

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Each year, you make an admirable contribution to supporting the MS Society. With your donations, your time and your energy, you help everyone affected by multiple sclerosis to obtain a wide range of essential services, which need to be maintained and developed. As well, you are guaranteeing that Canada maintains its leading position in the fi eld of multiple sclerosis research.

there is absolutely no doubt that these efforts are bearing fruit, in addition to kindling a strong feeling of hope within the mS community. Behind the scenes, people are busy cooperating and innovating at a furious pace—working at the level of the infi nitely small, with the hope of making huge discoveries. All eyes are on the same goal: ending mS. until that day comes, no effort will be grudged to discover the cause of the disease and perfect new and better treatments. And among all the eminent researchers who are dedicating their careers to multiple sclerosis, the ones from Quebec stand out: 17 of the 38 research teams funded

by the mS Society in 2011 were from our province; there are well over a dozen specialized mS clinics located in every corner of Quebec; and we have an impressive number of clinical neurologists and researchers, many of whom are internationally renowned.

mS research is in a ferment, and the time has come to take stock and ensure there is a point of convergence among all the stakeholders and the mS community. with this in mind, the Quebec division is organizing a major event for its members and the general public: the Quebec Summit on Multiple Sclerosis. On november 17, 2012, health care professionals and people affected by the disease will gather at the Centre Sheraton montreal Hotel. this will be a unique opportunity to take a sneak peek at the latest research and keep up with our current knowledge of mS, as well as the services offered to people who have the disease. with all my heart, i hope to see you there. mssummit.ca MS

louis Adam

message from the executive director

louis Adam

Sleep StudyA study of sleep problems that people with mS have is being conducted by dr. pierre duquette. participation is voluntary. if you would like to participate, please contact Élaine roger at sep.chum@ssss.gouv.qc.ca. MS

ISSN: 0822-5702Quarterly published by: multiple Sclerosis Society of Canada, Quebec division550 Sherbrooke St. west, east towerSuite 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.ca Website: mssociety.ca/qc

Editor: Catherine-eve royAssistant 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.

member of:

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I’ve always believed that people are fundamentally good. This deep conviction is confirmed when certain people cross my path and show just how much goodness is in them. This was the case when I met Gina Fiorito.

ms. Fiorito was diagnosed with mS in 1995. After struggling with denial, depression and occasional despair for several years, she decided that it was time for an attitude adjustment.

Gina is dedicated, generous and very inspiring. Owing to a series of trivial events and with the help of people she met along the way, she created a refuge for cats in 2005. Abandoned, sick, injured or mistreated felines... she takes them in, heals them, cares for them and loves them until she can find a reliable family who will adopt them and give them plenty of love. none of this would be possible were she not surrounded by people (veterinarians, pet supply store owners, volunteers, friends and donors) who share her dedication and help her achieve what has become her reason for getting up in the morning. in fact, this is what saves her from depression.

At first there were Bonnie and Clyde, two cats that already belonged to Gina. then Maggy arrived, her first rescue case. Shortly afterwards, Fripouille la magouille, an extremely affectionate, friendly cat, followed. i don’t remember when she took in the others, but i know that Faith required an operation on her paw only a few weeks after she was born, that Hope was pregnant when she arrived and recently gave birth to tuxedo, Clémentine, mini-wheat and several other kittens. Black has been blinded, but is one of the most adorable cats i have ever met!

You may be wondering just how many cats live with ms. Fiorito. when i asked her, the mother teresa for cats answered with a smile: “too many”.

Gina Fiorito does not allow multiple sclerosis to take over her life. Her rescue operation has become a very peaceful shelter for neglected animals. MS

mother tere-catBy Nathalie Kessler, Communications Coordinator

multiple SClerOSiS: Current And Future treAtmentSthis year, the Quebec division of the mS Society organized a series of conferences in different regions of the province. they were intended to describe the various therapeutic options available to people with multiple sclerosis and present an overview of future treatments and how they will expand the tools available to neurologists. participants also had a chance to question health care professionals directly, which created a favourable atmosphere for discussion and dialogue.

to date, four conferences in this series have been held, in montreal, repentigny, Sherbrooke and Gatineau. One last presentation will be held in 2012 in the lower St. Lawrence region. The date of that conference has not yet been confirmed. These conferences were presented thanks to an unconditional grant from novartis. MS

Gina Fiorito with Clyde

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In 2011, Dr. Jorge Ivan Alvarez received the David L. Torrey endMS Transitional Career Development Award from the endMS Research and Training Network, an initiative of the MS Society. Thanks to this financial support, Dr. Alvarez will be able to continue his research on the blood-brain barrier (BBB) for the next five years.

now 36 years old, dr. Alvarez was born in Colombia; he began his studies in microbiology at the universidad de los Andes in Bogotá. After that, he spent three years studying parasitic brain infections at the Corporación para investigaciones Biológicas (CiB) in medellín. His research focused on the immune aspects of neurocysticercosis, the most widespread parasitic central nervous system disease in the world. He then moved to the united States, where he investigated the same subject using an animal model, the mouse. it was while working with our neighbours to the south that he started to get more interested in multiple sclerosis: “A lot of our knowledge about the brain, brain immunity and the central nervous system has been generated by all the studies on multiple sclerosis.”

dr. Alvarez came to montreal in 2008, where he joined dr. Alexandre prat’s team at the université de montréal and learned more about multiple sclerosis. the team of researchers he belongs to was recently able to shed some light on the mechanisms whereby the blood-brain barrier blocks immune system attacks on the brain.

the BBB is a physical and metabolic barrier that prevents undesirable cells from invading the central nervous system. together with their team, dr. prat and dr. Alvarez have shown that endothelial cells (which line the inner surface of blood vessels) and perivascular

astrocytes (star-shaped cells that regulate the transmission of electric signals in the brain) play a key role in the BBB’s functioning. in addition to learning that astrocytes secrete sonic hedgehog protein and that endothelial cells express hedgehog receptors, the researchers discovered that both types of cells contribute jointly to the formation and integrity of the BBB.

dr. prat and dr. Alvarez also showed that the hedgehog pathway plays a key role in limiting the adhesion and migration of immune cells in the brain. Thus, the hedgehog system fights off immune system attacks on the central nervous system and contributes to maintaining an anti-inflammatory balance in the central nervous system.

in the medium term, the recipient of the david l. torrey award hopes that the studies now under way will lead to new strategies and better treatments for multiple sclerosis in all its forms (relapsing-remitting, progressive, etc.): “people with mS have every right to expect more information about this disease, and i think i can give them some answers.”

with his commitment to multiple sclerosis research, dr. Alvarez is undeniably contributing to the growth of this thriving field. In order to briefly present the recent discoveries published by his team and share his experiences as a postdoctoral student, he will take part in the Quebec summit on multiple sclerosis next november. participants will have the privilege of meeting a proud representative of the younger generation of researchers—an opportunity not to be missed! MS

portrait of a researcher: dr. Jorge ivan Alvarez By Marie-Eve Ouellet, Communications Coordinator

MRI of a MS patient: an important tool to Dr. Alvarez

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Saturday, November 17, 2012 Program of the day

9:00 a.m. Welcome and introduction

9:15 a.m. The Multiple Sclerosis Society of Canada’s research program dr. Karen lee, ph.d., Assistant Vice-president, research, multiple Sclerosis Society of Canada

9:30 a.m. The status of basic research on multiple sclerosis dr. Alexandre prat, neurologist and director, neuro-immunology laboratory, CHum research centre dr. Jack Antel, neurologist, montreal neurological institute, and scientific director, endMS research and training network

10:30 a.m. Break

11:00 a.m. Genetic predisposition and potential triggers of MS dr. John d. rioux, director, laboratory in Genetics and Genomic medicine of Inflammation dr. paul Giacomini, neurologist, montreal neurological institute

12:00 p.m. Lunch dr. Jorge Alvarez, postdoctoral researcher, CHum research centre

1:30 p.m. Current and future therapeutic options for multiple sclerosis dr. J. marc Girard, neurologist, CHum mS clinic

2:30 p.m. Managing MS symptoms dr. pierre duquette, neurologist and director, CHum mS clinic dr. Julie prévost, neurologist and director, Hôpital régional de Saint-Jérôme neurological clinic

3:30 p.m. Break

4:00 p.m. Quality of life: The key to rehabilitation for people with MS michèle Quinn, interim head, progressive diseases program, Centre de réadaptation lucie-Bruneau natacha Foidart, occupational therapist, neurology program, Constance-lethbridge rehabilitation Centre dr. nancy mayo, ph. d., epidemiology and Biostatistics, researcher, mcGill university Hospital Center research institute

5:00 p.m. Closing remarks

Quebec Summit on multiple Sclerosis

CENTRE SHERATON MONTREAL, 9 A.M. TO 5 P.M.

MULTIPLE SCLEROSISON

SUMMITQUEBEC

SATURDAY, NOVEMBER 17, 2012

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President’s Award Winner: Ginette Cardin

the president’s Award, presented to a person with multiple sclerosis, is the mS Society’s most prestigious award. this year, the Quebec division is acknowledging the contribution of a woman who is committed to the Society and whose primary objective is the well-being of its members. Ginette Cardin has chaired the Board of the laurentians Chapter since the end of 2007. right from the start, her upbeat attitude, leadership and skill were appreciated by everyone. She has also brought influential local people on board, calling them her “angels”, and this has added impetus to the chapter’s various fundraising activities. She has many achievements to her credit. whether for the mont-tremblant mS walk—organized to reach as many people as possible in the Laurentians region, a benefit dinner,

a golf tournament, a canoe excursion or an art exhibit, ms. Cardin strives to enhance the mS Society’s funding ability. Always looking to improve the services offered by the mS Society, she also instigated monthly meetings intended to counter isolation among people with mS. ms. Cardin’s considerable contribution is indisputable, although she insists that, without her angels, it could not have been done! MS

Richard and Paulette Lemire Award Winner: Lynda Archambault

making an outstanding contribution to the mS Society’s diverse fundraising activities, Lynda Archambault plays an active role in supporting the Society’s mission. ms. Archambault has lived with multiple sclerosis for over fifteen years, but the disease has not prevented her from living her life with gusto, vitality and optimism. An energetic woman with a positive outlook, she is a source of inspiration for everyone around her and, until recently, was the owner of a uniform boutique, Salon de l’uniforme. She never hesitates to get very actively involved in her community and supports a number of causes, including the one that is most important to her, mS. in 2004, she rode in the mS Bike tour for the first time. Two years later, she captained a team, Les pédaliers de l’avenir, composed of her family and friends. in order to raise as much money as possible for the cause, throughout

the year she organizes various fundraising activities: selling hot dogs, a benefit show and a golf tournament that has already raised over $50,000. ms. Archambault solicits funds from her supporters every year and is herself very generous. She also sponsors people she likes in other events organized by the mS Society. Since she became involved in 2004 and thanks to all the efforts of the people in her personal and business networks, ms. Archambault has raised over $220,000 for people affected by mS. MS

division Awards

Ginette Cardin receives the President’s Award from André Lespérance, on behalf of the MS Society Quebec Division Board of Directors.

Lynda Archambault receives the Richard and Paulette Lemire Award from Jocelyne Cazin, MS Ambassador.

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Division Award of Merit – Member Winner: Hana Salaheddine

As a member of the multiple Sclerosis Society of Canada since 1995, the year she was diagnosed with mS, Hana Salaheddine has kept informed of and has participated in the mS Society’s events, including the congrès espoir famille. Since she became involved, she has spoken about her life with mS at universities, at such events as the 2008 eCtrimS conference, and the health professionals’ conference. recently, she joined the national government relations committee as the Quebec division’s representative. She has met with mps, ministers and senators on parliament Hill in Ottawa to tell them about her reality—that

of people with mS—and the daily challenges of the disease. ms. Salaheddine also participates in fundraising events. the people who know her find her energy and determination very inspiring. MS

Opal Award for Caregivers Winner: Paul-André Boisvert

improving the quality of life for people with mS and their loved ones by providing appropriate accessible services in their region has been Paul-André Boisvert’s leitmotif. the founder of the Centre-du-Québec Chapter, he has held a series of positions as treasurer, chair and director of the group since 2000. mr. Boisvert is well aware of the challenges of multiple sclerosis. His wife, raymonde, was diagnosed in 1989 with the secondary progressive form of the disease. As her natural caregiver, mr. Boisvert assisted his wife for years and gave her all the care her condition required. A family man, he also

adapted their home to keep the family together as long as possible. in winter 2005, mrs. Boisvert passed away, but he continued his work with the mS Society. mr. Boisvert is an unparalleled example of altruism and generosity. MS

Division Award of Merit – Non-Member Winner: Jocelyne Cazin

with four friends who have multiple sclerosis, Jocelyne Cazin has demonstrated outstanding commitment and generosity towards the cause. An avid golfer, she got involved with the Quebec Division for the first time in 2005 when she participated in the mS Golf Challenge. the following year, she accepted to act as spokesperson for the event. ms. Cazin soon became the face of the mS Golf Challenge, as well as one of the well-known people associated with our cause. After acting as spokesperson for five years, she moved on and accepted to be honorary chair of the event. ms. Cazin is always available to attend fundraising activities anywhere in Quebec. Every time, she finds

the right words to say to enhance awareness. Furthermore, since her involvement began seven years ago, she has generously supported the mS Society with donations of just over $47,600. Kind-hearted and dependable, Jocelyne Cazin is a model of commitment and generosity for the cause. MS

Hana Salaheddine receives the Division Award of Merit – Member.

Jocelyne Cazin receives the Division Merit Award – Non-Member from Louis Adam, Executive Director of the MS Society, Quebec Division.

Paul-André Boisvert receives the Opal Award from André Lespérance, on behalf of the MS Society Quebec Division Board of Directors.

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There is still time to register for the 21st congrès Espoir famille, to be held October 19 to 21 at the Delta Sherbrooke Hotel and Conference Centre in the Eastern Townships.

the congrès espoir famille gives people with mS and their families an opportunity to get together, talk and help each other, and in so doing, cope better with mS.

workshops and presentations will deal with the following topics, among others: day-to-day living with mS, depression and mood swings, rehabilitation, clinical trials, sexuality and mS, accessible tourism, travel and culture, workshop for natural caregivers, taking charge of symptoms, how to live well in the present moment, current treatments, and research.

A special activity program is also planned for youngsters aged 6 to 17 to help them understand their parent’s disease. there will be discussions, symptom simulation, improvisation, quizzes, arts and crafts, etc. the conference also gives them an opportunity to become acquainted with other children and teens whose situation is similar to their own.

to see the complete program for the weekend and to register, go to: scleroseenplaques.ca/qc/espoirfamilleEn. You’ll need to hurry though, space is limited!

no internet access? Call mylène Huet at 514 849-7591 or, toll-free, 1 800 268-7582. please note that this weekend is being held in French. MS

the 21st congrès espoir famille Coming Soon!

mS Summer Camps: Can’t wait until next Year!Sixty children aged 7 to 16 who have a parent with mS attended one of the two week-long camps held this summer at Camp richelieu Saint-Côme in lanaudière and at Camp edphy international in the laurentians.

the mS Summer Camps help children understand mS while having fun. it gives them an opportunity to meet other youngsters and share their experiences with multiple sclerosis.

programming alternates camp activities (canoeing, kayaking, swimming, woodland challenge fi tness, rock climbing, team sports, camping, camp fi res, etc.) with MS awareness activities, which mainly take the form of games (discussions, symptom simulation, obstacle course, cartooning, improvisation, quizzes, wilderness survival, geocaching, etc.).

these camps were offered free of charge thanks to funding from the Fondation Club richelieu montréal, the André-Gauthier Foundation, the edith lando Charitable Foundation and the CiBC Bank. MS

NEW IN THE DOCUMENTATION CENTRElearning about mS makes it easier to cope with the disease on a day-to-day basis. Some helpful new information has been added to our documentation Centre. Consult the brochure Recognizing and Coping with Multiple Sclerosis Attacks and view the web clips on the mechanisms of mS, Les coulisses de la sclérose en plaques : les mécanismes de la maladie (in French only), and the survey of treatments for mS, Survol des traitements contre la sclérose en plaques (also in French only), at mssociety.ca/qc/services/Publications-MS.html.

The Summer Camp for

children aged 7 to 14.

By Carole Corson, Client Services Coordinator, Logistics and Youth Program

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Providing physical and emotional support for a person with MS is simultaneously demanding and fulfilling.

to meet the challenges that arise, a family caregiver needs to mobilize and invest time, energy and emotions. teamwork is the surest guarantee of success in providing satisfactory, high-quality support. it is the responsibility of both partners (the caregiver and the person receiving care) to communicate their expectations of each other. Open communication enables the partners to build a bond of trust and work together better.

Positive aspects of partnershipA successful partnership enables each partner to achieve some balance and develop her or his self-esteem. it favours the autonomy of the person with mS, reduces the risk of abuse of power or manipulation, helps avoid resentment, lessens the likelihood of a crisis, and makes it easier to “let go.”

don’t forget: limitations and disabilities do not mean that the person receiving care can no longer contribute and participate in managing his or her health. if you build mutual trust, you will avoid falling into the kinds of traps that too often give rise to feelings of guilt, powerlessness and misunderstanding.

Find out what resources are availablewhy should you make use of outside resources? Quite simply, to obtain support in your role as caregiver, to protect your physical and mental health, and to sustain a good quality of life. too often, caregivers think they have to do everything themselves. don’t hesitate to contact the MS Society to find out the various services on offer in your region. ClSCs and community organizations can also help you with your role as a caregiver.

we encourage you to consult the brochure entitled A Guide for Caregivers, which is available online in the section About mS – publications, at mssociety.ca/qc. MS

Caregivers’ Column: life partners with mSBy Diane Vendette Adam, Services Coordinator

telepHOne meetinGS FOr CAreGiVerSTuesday, September 11, 2012 – Being a caregiver. Guest speaker: rosie Bandhoo, mS nurse and nurse at info-Santé. ms. Bandhoo has agreed to share her own experience as a caregiver.

Tuesday, December 11, 2012 – Magnetic resonance imaging. Guest speaker: rosie Bandhoo, mS nurse and nurse at info-Santé. what is it exactly? why did the neurologist call for an mri exam? How should you prepare for the exam? what happens then? if you would like answers to your questions and a better idea of what mri is, don’t miss this meeting.

the telephone meetings are for caregivers of people with multiple sclerosis. to register, call 1 866 396-Aide (2433) or 514 485-7374 for the Care-ring Voice network’s information line. You can also visit our website to find out about the programming for 2013.

Other meetings will take place on February 12, march 12, April 9, and may 14, 2013. the topics will be posted online and will appear in the next MS Quebec. these meetings are being held in French. MS

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Challenging new Adventures!

the 23rd mS Bike tour was a success! the beautiful weather helped the 1,200 participants raise $1,240,000! We owe this achievement to the unfl agging determination of the cyclists and the commitment of our esteemed partners, including medavie Blue Cross, the title sponsor for the event.

“we are especially proud of the medavie Blue Cross (mBC) employees’ fundraising effort for the 2012 mS Bike tour”, said André Vincent, Vice president, Group insurance, Quebec. “At mBC, community commitment is one of our fundamental values and we encourage our employees to get involved, whether in health-related

causes or community improvement and well-being. it was with a view to acting on this corporate value that one of our employees approached our montreal management eight years ago to get us involved in the MS Bike Tour. At fi rst, our participation consisted mainly of collecting donations from our employees. However, over the years, we learned that mS directly affects some of our employees, including a member of our management committee. Since then, mBC employees’ involvement in mS Society events has become particularly important because many of them have taken up the challenge of contributing to the well-being of people with MS and, more specifi cally, those who work with us every day. we sincerely hope that our employees’ efforts will help build a future without mS!” MS

The MS Society’s Quebec Division continues to innovate by offering new challenges that will certainly please our more adventurous supporters. Racing, trekking or cycling: there is something for everyone!

From november 30 to december 3, 2012, you can fl y to Las Vegas for a nighttime run along the Strip, the liveliest street in this city that never sleeps. Cheered on by a jubilant crowd and the dJ’s music, run a half marathon (21.1 km) or a full marathon (42.2 km) to benefi t the MS Society.

You prefer cycling? ride through France and explore some stages of the famous tour de France in 2013. every day will be challenging: the group of cyclists will cover an average of 100 kilometres per day!

Here’s something to take your breath away! Climb to new heights in the mS everest Base Camp Challenge! everest, the world’s highest peak! two groups will be going, one in march and the other in October 2014.

the mS Acotango Challenge is about to depart.As you read these lines, the eleven challenge participants will be packing their bags, ready to leave for Bolivia. each one of them has already raised a minimum of $10,000, for a total of over $111,000.

You can follow their travels on the daily blog at defi sdaventuresp.wordpress.com (in French only). For more information on any of the mS Challenge adventures, visit mssociety.ca/qc/events. MS

“we are especially proud of the medavie Blue Cross (mBC) employees’ fundraising

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mS events

On August 23, Canadians across the country visited A&w to enjoy one (or more) teen Burger(s). On that day, A&w gave the mS Society $1 for every teen Burger sold. A social media campaign beforehand invited people to contribute and advertised the event. thanks to all the Quebec franchisees and all the volunteers! MS

the second Tournée de l’espoir, a motorcycle tour for monique and Sophie thibault rode through rain on June 2nd. nevertheless, the good mood of the 60-plus motorcyclists carried them more than 220 km and they raised approximately $100,000. thanks to Sophie thibault for her unconditional support, and thanks to the dedicated members of the organizing committee. MS

More than 50 golfers fl ocked to the Château Bromont and waterloo golf clubs on July 2. under a sunny sky, they took up the challenge of playing 100 holes of golf in one day. the event raised $300,000 for the Quebec division of the mS Society. thanks to our honorary co-chairs, Jocelyne Cazin and richard de Carufel, and the members of the organizing committee, chaired by Claude lespérance. MS

On may 18, 2012, close to 450 guests took part in the women Against multiple Sclerosis (wAmS) gala luncheon, at which we had the pleasure of paying tribute to the professional success and philanthropic involvement of isabelle Hudon, president of Sun life Financial, Quebec. wAmS activities in 2011–2012 raised almost $180,000, bringing the total amount raised since the movement was launched in Quebec, in 2006, to more than one million dollars. MS

the mS Carnation Campaign, held throughout Quebec on may 10 to 12, was a great success once again. with the help of many volunteers at hundreds of points of sale, and thanks to the generosity of everyone who purchased fl owers for the occasion, more than $410,000 was raised. Our sincere thanks to all! See you next year. MS

thousands of walkers got together on April 29 and June 3, 2012, for the mS walk. At the time of writing, more than $1.2 million has been raised. However, we should remind readers that this is just a preliminary result, since the Quebec City, Sherbrooke and Sorel-tracy walks will take place on September 9. thanks to all our walkers, volunteers and donors! MS

upcoming mS events

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Fundraising Campaign Since June 1st, the When our pennies work together, they can work wonders! fundraising campaign has been going full swing! please turn your hoarded pennies into good deeds by taking them to the drop-off points. See supportms.ca for details! it just makes CentS! MS

July 2013

July 2013

May 26, 2013

August 2013 A&w rendez-vous

May 2013mS Awareness month

May 9-11, 2013

August 17-18, 2013 VictoriavilleAugust 24-25, 2013 lévis

May 24, 2013

June 2013June 2013

From November 30 to December 3, 2012 las Vegas marathon

departures: January 26, 2013 and in January 2014

departure: October 7, 2012

Société canadienne de la sclérose en plaquesDivision du Québec550, rue Sherbrooke Ouest, tour Est, bureau 1010Montréal (Québec) H3A 1B9

Port de retour garantiService de correction d’adresse requis