The Amyotrophic Lateral Sclerosis Society of ´s Newsletter Volume 1, number 2 • Fall 2011

OUR PEOPLE The Inspirational Robert Michaud

f you were to ask me to describe myself, I would answer that I am the Ifather of four wonderful kids, Philippe, Marie-Pier, Ann-Liese and Clau- dine, the husband of a lovely redhead from Saint-Ignace-de-Stanbridge, named Pierrette, the uncle of Jonathan Duhamel (2010 WSOP world poker champion), and, soon, the grandfather of a baby boy, eagerly awaited in December. I am proud of my career at IBM, my service as town counsellor in Sainte-Sabine, and my involvement as a volunteer in local minor hockey and female hockey. What’s more, I am living with Bulbar ALS. I was diagnosed last year, Le on September 22, the day after my 53rd birthday. After the initial shock bowled me over, I decided not to give up, but to take full advantage of the time I had left by getting involved in ALS Society activities, fi ghting to improve conditions for people living with the disease, living out my dreams with my family and loved ones, and pursuing my passions, even with this illness. One of my passions is hockey. In fact, I spent the past 22 years as a coach, director and president of a minor hockey organization in Farnham and as president of the Farnham Novice Atom hockey tournament. At a certain I started concentrating on female hockey, as two of my girls wanted to play. I was a coach and director of female hockey in the Eastern Townships, and I put together the fi rst-ever all-female provincial cham- pionships. My girls still play, the youngest for the University of team, the Carabins. Robert Michaud with Céline Dion just before her show in Las Vegas. For the past two years, I’ve pursued my second passion, making

Continued on page 2

A MESSAGE FROM ONE OF OUR bOARD OF DIRECTORS Dear friends, The key ingredients to this event? Team- It is with much pride that I have served work, passion, determination and will. on the Board of Directors and as president I am very proud to be part of the ALS of the Fundraising and Public Relations team. We share the same vision and put Committee at The Amyotrophic Lateral our combined passion and talents toward Sclerosis (ALS) Society of Quebec for the the cause. Please join us in our eff orts, and last four years. help maintain the ALS Society as a key re- As some of you may know, I have ex- source for people aff ected by the disease perienced the strength and force of ALS, and as a supporter of research. as my brother died of the disease in 2007. Please contact the Society for more in- Upon his diagnosis, I was surprised and formation about our upcoming fundrais- frustrated to fi nd out that there is no cure, ing events or if you would like to initiate nor any eff ective treatment for ALS. I de- one in your region. cided that I would do as much as I could On behalf of all my colleagues on the in my brother’s name, and in the name of Board of Directors, thank you for your so many others aff ected by this terrible continued support. disease. Luc Villandré and Dominic Delambre Luc Vilandré It’s by taking action that we can make a diff erence. That’s why I am not only a part in a three-day, 300-km Ride. This In every Bulletin, we would like to member of the Board of Directors, but I year, Dominic Delambre (whose father An- introduce you to people at ALS Quebec also support our cause by participating in dré Delambre died of ALS) and I were the who not only work behind the scenes with our annual campaign and events, such as proud co-presidents of an event involving the Board of Directors, but who also take the “Ride for ALS.” 92 cyclists, who raised over $214,000 by action and get personally involved with In 2008, a group of six cyclists took cycling 300 km in the hills of Vermont. our eff orts.

The Bulletin 1 - continued from page 1 out of every three people, compared to MESSAGE FROM OUR OUR PEOPLE seven in 100,000 for ALS, you can under- Robert Michaud stand where most of the research money EXECUTIVE DIRECTOR gets allocated. That’s why we have to hand-crafted wooden pens. As an ac- work harder, and why each fundraiser is countant, I’ve always had a weakness for so important, so that we can find a cure I Am Inspired nice pens. I was admiring a variety of for this terrible disease someday. fine pens during a visit to the ‘Foire du The fantastic and devoted people or the last seven years, I have come bois’ in Saint-Hyacinthe, when I stopped at ALS Quebec are not only supportive Fto work feeling positively inspired. I in front of one booth, thinking I recog- caregivers for patients and their fam- am inspired by our mission, by our vol- nized the artisan. It wasn’t until I read ilies, but also work hard to raise money unteers, by our staff, and especially by his business card, which read “Serge for equipment, activities and research, those living with ALS and their families Guérin, of Iberville,” that I clued in. The which is vital in the case of this disease. I who support them so bravely. All these man was my favourite hockey coach, support them as much as I can in return, wonderful people in my life inspire not whom I had not seen in 33 years. by going all out for fundraising cam- only me but everyone at the ALS Society We started to talk, and I found out paigns like the ‘Ride for ALS.’ My team to work passionately, try harder, raise he had not one but four forms of can- of nine cyclists, called “Les Pédaleux de more funds, create better programs and cer, which he was fighting Bob Michaud,” raised simply be better people. the same way he used to more than three times As I look around me this autumn, lead us to victory on the the minimum amount. there are further testimonials of inspira- ice. I was quite moved We worked really hard, tion everywhere: Tony Proudfoot’s legacy by our meeting, and con- but it was a lot of fun. is thriving; we are overjoyed by the num- tacted his wife to see if At our team supper this ber of teams and spirited walkers at this we should organize a October, we were even year’s Walks for ALS across the province; team supper. She thought considering the idea of people touched by ALS are coming for- he would enjoy that. I having two teams next ward to share their stories with the media tracked down 17 of the year. and help us raise awareness; attendance 19 players from our old After the event, at our activities is increasing; members team, and we had that Robert Michaud, Pierrette Grenier the Executive Director, are connecting outside of our activities team supper, 33 years and holding one of Claudine Cook, asked and supporting one another; and our later. Serge has since Robert’s hand made pens. me: “How on earth did Board of Directors is injecting renewed passed away, but his pas- you and your cycling enthusiasm, direction and support into sion for wooden pens still lives on, in team manage to raise $33,500?” I told the Society. All in all, we are build- me. her, tongue in cheek, that it was just a ing a stronger and unified community. Ever since my diagnosis, I’ve been question of reeling them in: I knew all I hope that you, too, are inspired like lucky. My voice has gotten noticeably the players and, as Michel Bergeron I have been. I ask today that you “pay it weaker, but I still have the use of my would say, I gave them realistic object- forward” and help inspire others to join legs, arms and hands. What’s more, my ives, like finishing in front of all the our cause, as I know good things are wife and kids and I have decided to live other teams! ahead of us. Together, we can make a dif- as if each day were our last. We went on Actually, I started by going to see ference. a Caribbean cruise, and then another everyone who had benefited financially Inspirationally yours, cruise to Alaska. Sure, we spent more from me during my life (my banks, the time in our bathing suits in the Carib- caisse populaire). I even paid a visit to Claudine Cook bean, but we managed to swim in Alaska, the director of my local funeral parlour, Executive Director too. We were in the hot tub on the ship, and said to him (in my best Godfather- with an incredible view of mountains style voice): “You’re going to make and glaciers all around. It was totally money off of me, so wouldn’t you like to sublime. contribute part of that sum to the Ride We also travelled to see the Grand for ALS?” Canyon. We flew on a helicopter to the Then, I called upon all the donors bottom of the canyon, where we took who used to contribute when I worked a boat down the Colorado river, sur- for the Farnham Novice Atom hockey rounded by the magnificent cliffs of the tournament, where incidentally I had the Grand Canyon. chance to meet , Dany And last April, Pierrette and I took Dubé, Guy Lafleur and Réjean Houle, the kids to see Céline Dion in Las Vegas. who served as honorary president of the We even met with Céline and René be- tournament. fore the show. It turns out that they are And now, I have three new goals in aware of ALS, as Mr. Angelil’s accountant, mind. I’d like to participate in media Mr. Delambre, had succumbed to the dis- interviews to let more people know about ease. I took advantage of the meeting to ALS. I’m trying to develop an agreement present the stars with two of my wood- with Apple to provide significant rebates en pens: Rene’s in ebony, and Celine’s in for ALS patients on iPads with “Speak box elder burl. It!,” the text-to-speech application which I speak to many people, famous and helps us communicate much more eas- not, about my experiences living with ily, and develop similar subsidies with ALS, to raise public awareness as much other corporations. And I have a lot of Claudine at the Ride for ALS 2011, flanked by Dr. as I can. I’ve taken the stage at several pens to make before Christmas! Angela Genge (L), Neurologist and ALS Specialist at ALS Society of Quebec events, such as As I tell my friends, this disease has The Neuro, and Diane Tkalec (R), rider and volunteer the Vincent Damphousse poker tourna- no idea who it has taken on. I will give it coordinator of Spinning for ALS. ment and the golf tournament. Why? a hell of a ride: be ready ALS. When you know that cancer affects one

2 The Bulletin OUR CAREGIVERS WHY IS MANAGING YOUR STRESS SO IMPORTANT?

Realistic Stress-Management Tips • 25% of all caregivers will be diag- nosed with clinical depression. By Norma Gilbert, Caregiver Support Centre, CSSS Cavendish • Caregiving puts caregivers at risk for serious health issues and they he responsibility of being a care- of all your stressors. Look at it with a have much higher mortality rates T giver can often be very stressful. critical eye and number the items in then non-caregivers. It presents multiple challenges and re- terms of priority. quires skills and knowledge you may not • Delegate to others. Look at your • Caregiver burnout is very common, already have before starting out. In addi- list again. Is there anything you could and it can mean that your health and tion to ensuring that your loved one’s hand over to someone else? It’s not al- that of the person you’re caring for is needs are being met, you may also have ways easy to ask for help, but you may compromised. to put a lot of energy into finding infor- discover that others have just been wait- mation and resources for him or her. ing to be asked. You do not have to be in You’re sometimes torn between caregiver charge of everything. Even if things are duties and other family and job demands. not done in exactly the way you would yourself and others. If you can’t delegate Concerned friends, family members, and have done them, at least they’re done. to someone else, maybe you can reduce health care workers all encourage you • Be realistic in your expectations of your list by eliminating all non-essential to “take care of yourself.” You’re tasks. given dire warnings about doing • Manage your own health by eating too much and the toll it is taking healthily and getting exercise when you on your own health. And although can. In fact, exercise itself can be a great in your heart you agree with them, stress reducer. Increased blood circula- how can you find the time to put tion and respiration from exercising can your own needs on your To Do reduce blood pressure and stress hor- list when your loved one’s needs mones. seem much more important? Re- • Relax when you can. At every oppor- search shows that in coping with tunity, do something that will make you stress, it’s not the big crisis events feel good. Read a book, meet a friend for that can wear us down so much coffee or a movie, or just breathe. What- as the daily hassles. Daily hassles ever it takes. A change of scenery even are all the small things that, when for just an hour or two can work won- combined, become hard to man- ders. age and can have a cumulative ef- • Stay positive by rewarding yourself fect on mental well-being. So here for the good job you are doing. Studies are some realistic tips to help you show that a positive attitude can increase manage your stress. feelings of motivation and well-being. It • Recognize your stressors. The can also reduce feelings of frustration first step in managing stress is to and self-doubt. name it. It’s not enough just to • Share your worries. Find a sound- say that being a caregiver is your ing board for your concerns. Being a source of stress. What exactly are caregiver can take an emotional toll as you doing? Sometimes you may well. Talk to a good friend or a therapist. feel overwhelmed by so many Or you can join a support group. Many things coming at you at once that people who attend groups say that it it’s hard to separate top priorities makes them feel less alone and helps from less urgent ones. Make a list Jean-Guy Émond and Aline Thibault them keep things in perspective.

Arnaud Blanc and Nathalie Quesnel Iravani Fard and Mandan Alavi at a Laughology Workshop

The Bulletin 3 Daniel Berthiaume

RESEARCH

What’s New multiple parts of the brain, not just the ALS is typically localized in one region motor cortex responsible for movement. of the body at onset, with subsequent Breakthrough in Identifying Genetic The work of Dr. Sanjay Kalra, a neurolo- spreading to other areas of the body,” Cause of ALS gist and ALS Canada-funded researcher at says Megan O’Neill, a PhD candidate in The long-sought genetic abnormality the University of Calgary (and ALS Can- Cashman’s research laboratory. “[This] is that is the most common cause of ALS ada Board member) “answers important an important process to understand as it and Frontotemporal Dementia (FTD) has questions about the degenerative pro- may lead to new avenues of therapeutic now been identified, according to two cess in ALS which cannot be addressed intervention.” landmark studies published in Septem- by the use of animal models,” says ALS ber. These very important studies, which Canada Vice-President, Research, Denise New transgenic mouse improves involved three —Dr. Ian Mack- Figlewicz, PhD. “The results are laying the study of ALS enzie (Vancouver General Hospital and groundwork for use of imaging as a tool Canadian researchers have created a UBC), Dr. Lorne Zinman (Sunnybrook and to track the efficacy of therapeutic agents transgenic mouse that more accurately U of T), and Etkarina Rogaeva, PhD (U of which are being brought to clinical trial.” expresses the symptoms of ALS, mak- T)—will allow precise genetic screening to ing it possible to study the disease using aid in the genetic counselling process for Discovery May Revolutionize Treat- imagery of neural imflammation in vivo, affected families, further our knowledge ment of ALS and to follow the progress of ALS in the of ALS, and provide both impetus and A new study by Dr. Neil Cashman (Uni- mice. The TDP-43 mouse model, created opportunity to learn more about patient versity of British Columbia) provides evi- by Dr. Jean-Pierre Julien, PhD, and CHUQ care. dence for the induction of protein mis- colleagues Jasna Kriz, MD, PhD, Daniel folding that could significantly improve Phaneuf, PhD, Christine Bareil and Vivek MRIs show how ALS affects the brain our understanding of the pathogenic Swarup, as well as Janice Robertson, PhD According to two peer-reviewed papers mechanism of ALS. The results, pub- (U of T) and Guy Rouleau, MD, PhD (Uni- in the American Journal of Neuroradiol- lished in the Proceedings of the National versity of Montreal), is described in a re- ogy, MRI research shows that ALS attacks Academy of Science, “would explain why cent issue of Brain magazine.

by providing information on the illness, not hesitate to let me know more about The Evolution support, conferences and help in acquir- your needs and expectations. I welcome ing technological aids. Over the last few all your questions and comments. of Our Services years, we’ve started up several new pro- I would also like to take this occasion grams and services, such as interactive to thank our dedicated administration, Véronique Pignatelli, groups for people with ALS staff and volunteers, each of Director of Support Services and their caregivers, tele- whom really puts their heart conferences, regional excur- into everything we do here at sions, social activities (such the Society. ’m delighted to be back at the ALS Soci- as apple-picking, trout-fish- Finally, I’d like to express Iety after a wonderful maternity leave, ing, sugar shack), bereave- my profound gratitude to- and it is with pleasure that I write you ment support groups, assist- ward everyone who is directly these few words. ance in adapting homes, and affected by ALS, and to their The overriding of the ALS Soci- a financial contribution pro- loved ones. You have been a ety of Quebec is to provide services and gram. great source of inspiration support to people touched by the illness Considering the import- for me over the past seven in order to improve their quality of life. ance of support for those af- years. Thank you for your I started working here as a social worker fected and for their caregivers trust, and for sharing your back in 2004, and ever since I have been at all stages of the illness, Yves Lafleur and Denis personal stories. Your pres- privileged to be a part of the team, and we’re intensifying our efforts Dorion at the fishing trip ence, your determination and proud to contribute to furthering our ob- to better meet the needs of the remarkable courage you jectives and improving our services. all concerned. We’re also working to im- show in regard to this illness have taught Since its start, in addition to finan- prove our regional services. In order to me to embrace life with everything I’ve cing medical research, the ALS Society help us continue to develop the best pos- got, no matter what challenges or difficul- of Quebec has been pursuing its mission sible programs and services, please do ties lies in my way.

Apple picking outing Claudine Cook, Carlos Botelho and Véronique Pignatelli

4 The Bulletin Daniel Berthiaume

CALENDAR VOLUNTEERS IN ACTION Upcoming Now it’s My Turn to Help Activities We at the ALS Society of Quebec are proud of all our volunteers. We’re shining a spot- light on one of these volunteers in each issue of the Bulletin. Daniel Berthiaume is a and Events specialized educator who has long worked in a rehabilitation centre for people living with a disability. Father of two grown children and grandfather of two little ones, Dan- iel lives in Montreal with his wife. He has been helping us out once a week since 2009.

’ve known the ALS Society of Quebec to personalize someone’s birthday with Ifor a long time. During my 34 years a hand-written card); participating as a as a specialized educator at Montreal’s volunteer in activities such as the Walk Lucie Bruneau Rehabilitation Centre, I for ALS and the Celebrity Softball Game; worked in partnership with helpful par- taking photos of our members and their ties from CLSCs, specialized ALS clinics families during the Society’s regular out- and, of course, the ALS Society. ings; preparing information kits (col- As a system navigator (someone who lecting all the information, creating files helps new patients navigate the health- suitable for printing and assembling the care system), my role was to assess the kits); creating computer files to assist needs of people living with a disability, with monitoring costs and equipment; to locate the appropriate helping resour- and leading our interactive group meet- ces within the Centre, and to follow up ings for people affected by ALS. November 9, as the situation changed over time. Over The ALS Society was a huge support to from 7 to 9 p.m.: my last five years there, I worked with me when I worked at the Lucie-Bruneau Bereavement Support Group people affected by multiple sclerosis and Centre. They provided advice and equip- amyotrophic lateral sclerosis. ment to those affected by the disease and I remember very clearly the day that their families, which was of great assist- November 16, someone with ALS, who I was trying to ance to us. It’s my turn, now, to help the from 1 to 3 p.m.: assist as a system navigator, stopped ALS Society carry out its mission. Interactive group for people with me in my tracks with a question: “What The ALS Society of Quebec is made ALS and their caregivers am I supposed to do about ALS?” For up of a great team of people who are ex- her, everything was futile and life was, tremely passionate about their work. It’s for all intents and purposes, already not an easy task to tackle an illness like November 23, over. I thought about that a lot. Finally, I this one and to talk about the end of life, from 1 to 4:30 p.m.: came to understand that, while we can’t but they do so with great compassion Conference in Quebec with neurologist, change much about the illness itself, we and caring for others. It’s their deep com- Dr. Jean-Pierre Bouchard can still take advantage of the time we mitment that allows them to keep at it. have left with our loved ones. It was my As for me, I’m inspired by all those role to help people do just that. with whom I’ve had the honour of shar- November 29, When I retired in 2009, I became a vol- ing both difficult and lighter moments. unteer for the ALS Society knowing full It’s the memory of those we’ve lost that from 7 to 9 p.m.: well what I was getting into. I help out motivates me to help those who need me Teleconference: Introduction To Music one day a week. I try to pitch in wher- now. Therapy, with Sandrine Zuyderhoff, ever there is a need. My tasks include Thank you for your attention. music therapist. sending birthday cards (taking the time Daniel Berthiaume December 3, from 11:30 to 3:30 p.m.: Annual Holiday Lunch, in Sherbrooke and Quebec For me, volun- December 7, teering means giving back some from 7 to 9 p.m.: of what I’ve been Conference with occupational therapist, Nathalie Beauvais, from the St-Louis fortunate enough CLSC. Theme: Technological Aids. to receive.

December 10, from 11:30 to 15:30 p.m.: Annual Holiday Lunch in Montreal

Daniel Berthiaume with Véronique Pignatelli, Director of Support Services

The Bulletin 5 ALSfoundraising fundraising Events Events

Thanks to all of our participants, donors, volunteers and partners who contributed to the success of our fundraising events across the province.

e Congratulations to Alain Bérard, winner of the David Schnitzer fundraising award, and his 150 team members, on raising $39,300 at the Montreal Walk for ALS!! Athony Calvillo at the Montreal Walk with Vicki Proudfoot. On behalf of our team, congratulations Anthony on becoming pro football’s all-time e Yamil Coulombe, walk coordinator, with the group passing leader! d decorating the city of Gatineau in blue!

e Presentation of the Inspired Mosaic by players of the e Gilles Martel, walk coordinator and Yves Lafleur, Montreal Alouettes, The Gazette, Claudine Cook and family psychosocial counselor of the ALS Society, leading the members of the late Tony Proudfoot Charlevoix walk with candles Walks for ALS for Walks Pedro Martinez, former Expos player and 3-time Cy Young winner, signing autographs in Quebec City. d

e Daniel Desrosiers, walk coordinator, Marc Savary, board member, accompanied by Odette Lacroix (winner of the David Schnitzer trophy) and the Fab Four team (winners of the Pierre Lacroix trophy). e Unforgettable moment with the celebrities and ALS Society and Board members before the first pitch.

e Celebrities of the 6th annual Celebrity Softball Game: Moises Alou, Vincent Damphousse, Tim Raines, Pedro Martinez, Rodger Brulotte, Sebastien Benoit, Alain Côté, Jean Michel Dufaux, Bertrand Godin, Jérôme Landry, Jean-Luc Legendre, Mario Marois, Annakin Slayd, Jacques Doucet, Denis Boucher, Michel Laplante, Philippe Boucher, Alain Choquette, Marc Fortier,

Stéphane Dupont, Marc Griffin, Carl Marotte, Dave Pichette and Pierre Vézina Game Softball Celebrity

6 The Bulletin eThanks to all the dedicated volunteers who gave us a helping hand at each of our events! Above: Volunteer group at the “Ride for ALS” Walk for ALS for Walk e Jean-Guy Émond, coordinator, and walkers from “Team Potton,” who raised the most funds at the Walk for ALS in Sherbrooke. Golf Tournament Golf e Cheque presentation at the 4th annual Bell ALS Classic hosted by Vincent Damphousse, at Islesmere Golf Club. L to R: Yvon Lambert, e Pierre O’Donoughue, representing the mayor of Brossard, with Jean Martel, mayor of Boucherville, and Claudine Cook Vincent Damphousse, Claudine Cook, Michel Beaudry and Daniel and the “Ride into Town” team, raising over $10,000! Malandruccolo, VP of ALS executive committee.

e The MM Racing Team with their captain Maude Dufour e Robert Michaud and his team, who raised $34,500. Bravo! (1st from the right) and Daniel Malandruccolo (3rd from the right), eMontreal Alouettes players with

VP of the Board of Directors. ALS for Ride Carlos Botelho at the 11th Walk for ALS in Montreal

gCelebrating another great event at the Montreal Casino. R to L: Jonathan Du- hamel, world poker champion (2010), with his uncle, ALS member Robert Michaud, Vincent Damphousse, Pierrette Grenier (aunt) and Philippe Michaud (cousin). PHOTOS CREDITS: LINE FORTIN AND GILLES CORBEIL

e NAFTA Riders team, with Geneviève Bertrand, President of the Board of Directors and Scott Lear (2nd from the right), dedicated volunteer at the Society. poker Tournament poker

f Poker Tournament in support of the ALS Society. Over $105,000 raised over the last 2 years! From left to right, back row: Mathieu Proulx, Sophie Bourgeois, Étienne Boulay, Michel Bergeron, Claude Lemieux, Yvon Michel, Éric Desjardins, Vincent Damphousse, Marc Dupré, Jonathan Duhamel and Stéphane Matteau. From left to right, front row: Isabelle Tremblay and Nanette Workman.

The Bulletin 7 Tony Proudfoot Fund

This mosaic was created with photos of 500 people, some who have been touched by ALS and others who have helped us increase awareness and raise funds. Tony Proudfoot’s image is in the background, representing strength, courage and perse- verance, the qualities with which each of these people faces the disease. These are our superheroes who inspire us each day. These are the faces of our team in the fight Als society of quebec team against ALS. Claudine Cook Executive Director [email protected] Assunta Badalone Administrative Director [email protected] Véronique Pignatelli Director of Support Services [email protected] Kate Busch Equipment and Financial Aid Coordinator [email protected] Yves Lafleur Psychosocial Counsellor [email protected] Elizabeth Barbosa Support Group Coordinator [email protected] Krispahlyn Daria Events Coordinator [email protected] [email protected] www.Sla-quebec.ca

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Team Proudfoot8 The Bulletin Inspired Mosaic La Mosaïque d'Inspiration