First Chairman of the Medical Advisory Board

La version française suit.

The Medical Advisory Board was created in 1958, currently known as the Medical and Scientific Advisory Committee. It provides advice and makes recommendations to the Board of Directors on research policy, granting programs, and funding. The Committee is comprised of dedicated volunteers from across Canada who have expertise in neuromuscular disease; together, they represent various perspectives from the health professional and patient communities.

Here is the introduction of the Medical Advisory Board and its first Chairman from page five of the April 1958 issue of the Muscular Dystrophy Reporter.

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D’abord créé sous le nom de Conseil consultatif médical en 1958, le Conseil consultatif médical et scientifique remet au conseil d’administration de Dystrophie musculaire Canada des avis, conseils et recommandations sur sa politique de recherche, ses programmes de subventions et son financement. Issus de toutes les régions du pays, chacun des membres de ce comité possède une expertise reconnue dans le domaine des maladies neuromusculaires. Ensemble, ils représentent les opinions et points de vue diversifiés du milieu des professionnels de la santé et de celui des patients.

Parue dans le Muscular Dystrophy Reporter d’avril 1958, la coupure de presse qui suit présente aux lecteurs le premier président du Conseil consultatif médical de l’époque, le Dr A.L. Chute (en anglais seulement).

Founding of Medical Advisory Board

Dr. Ronald Worton

Dr Worton2La version française suit.

For 60 years Muscular Dystrophy Canada has been dedicated to finding a cure and funding research for neuromuscular disorders.  Throughout our history and with the support of our donors and healthcare partners we have funded leading Canadian researchers and international research projects.  This has led to advancements in treatments and has helped Canadians affected with neuromuscular disorders live longer, more enriched lives.

One of the biggest breakthroughs came in 1987.  Dr. Ronald Worton, renowned medical researcher and founding CEO of the Ottawa Hospital Research Institute, and his team at The Hospital for Sick Children located the casual gene for Duchenne and Dr Worton3Becker muscular dystrophies. This discovery has led to further research and clinical trials to find treatments and cures, and better diagnosis practices. It was also groundbreaking to find that both Duchenne and Becker muscular dystrophies are caused by a mutation on the same gene, though the mutations are different.

In April 2014, Dr. Worton will be inducted into the Canadian Medical Hall of Fame.

Click here to read more about Dr. Worton.

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Dr Worton2Depuis 60 ans, Dystrophie musculaire Canada se consacre à trouver un moyen de guérir les maladies neuromusculaires et finance la recherche en ce sens. Au cours de notre histoire, et avec le soutien de nos donateurs et partenaires du domaine de la santé, nous avons soutenu financièrement des chercheurs canadiens de premier ordre ainsi que de grand projets internationaux qui ont permis de réaliser de grands progrès dans le traitement de ces maladies et d’aider les personnes qui en sont atteintes à vivre mieux et plus longtemps.

L’une des percées les plus importantes s’est produite en 1987, lorsque le Dr Ronal Worton, chercheur médical renommé et premier chef de la Dr Worton3direction du Ottawa Hospital Research Institute, et son équipe du Hospital for Sick Children ont localisé le gène à l’origine des dystrophies musculaires de Duchenne et de Becker. Cette découverte a mené à d’autres recherches et à des essais cliniques en vue de mettre au point de nouveaux traitements thérapeutiques et curatifs et de meilleures pratiques diagnostiques. Le fait de découvrir que ces deux formes de dystrophie musculaire étaient causées par des mutations différentes dans un seul et même gène allait aussi donner un élan important à la recherche en ce domaine.

En avril 2014, le Dr Worton sera intronisé au Temple de la renommée médicale canadienne.

On trouvera plus d’information (en anglais) sur le Dr Worton au : http://ow.ly/uACeg

Show your stuff at the Toronto Walk for Muscular Dystrophy!

Talent ShowAt this year’s Toronto, Ontario event, we will be hosting a local talent show.

If you have a talent, we want you to share it! Whether it’s wiggling your nose or singing a song, show off your moves and get into the spirit of fun at the Walk for Muscular Dystrophy!

You can be an individual or participate as part of a group, the ideas are endless. There is no minimum time requirement, but a maximum of 2-3 minutes per performance.

Spots are limited! The first six acts to sign up will be a part of the show. To share you talent, please e-mail walkformusculardystrophy.on@muscle.ca. You will receive a confirmation telling you if you are one of the first six.

We look forward to seeing the show!


Partnerships at Work

cliniccropLa version française suit.

Last year, a new educational venture was held with the support of Muscular Dystrophy Canada. In partnership with Holland Bloorview and Sick Kids this creation was a family day for those supporting people living with Spinal Muscular Atrophy (SMA); these included children, young adults and adults, as well as their families and caregivers. Dr. Reshma Amin explains how the Spinal Muscular Atrophy (SMA) Family Day came about:

“I work in the Complex Respiratory Care clinic at The Hospital for Sick Children along with Dr Theo Moraes, Cathy Daniels NP, Faiza Syed RRT and Ellie Lathrop SW. Our team follows children dependent on respiratory technology (eg BiPAP and invasive ventilation,) many of whom have neuromuscular disorders such as Spinal Muscular Atrophy. Many of these children are often jointly followed at Holland Bloorview Rehabilitation Hospital for their neuromuscular care by Dr. Laura McAdam, the co-chair of this event, and her team. In clinic one day, while we were discussing transition to an adult healthcare center, an adolescent mentioned that he wanted to go to university and that he would love to be able to talk to another young adult with SMA that was successfully attending university. This got us thinking that we should organize a family educational event to facilitate kids with SMA being able to talk to other kids with SMA about ‘real life’ issues.”

Over 100 individuals (a full house) attended the event – most from the Greater Toronto Area, but participants from Thunder Bay, Ontario and New Brunswick were also present. The goal for the day? “To increase awareness about Spinal Muscular Atrophy in the community and to further educate caregivers, and children affected by SMA,” says Dr. Amin. “More specifically we wanted to increase the knowledge of families and children surrounding the medical, and psychosocial impact of SMA. We wanted to provide a venue in which we could foster supportive relationships between affected families. Lastly, we wanted the children and their families to learn of and appreciate the current scientific research activities that are ongoing for SMA.”

The day consisted of listening to many speakers, and participating in discussions and networking opportunities:

“Our key speakers are internationally renowned for their work with Spinal Muscular Atrophy. Dr. John Bach, a Professor of Physical Medicine and Rehabilitation from University Hospital, Newark, New Jersey, who has unparalleled  clinical experience with those affected by this disorder, provided us with a provocative overview of the respiratory management of SMA. Brian Weaver, MS, RRT-NPS, RPFT, a respiratory therapist and Department Head at Kimble Medical Center, Newark, New Jersey, provided a practical review of the respiratory complications and the role of respiratory technology for children with SMA. Dr. Alex Mackenzie, a clinician-scientist from the Children’s Hospital of Eastern Ontario provided a high level review of SMA research and what clinical trials for children with SMA are current and planned.  There were many other speakers including Tracy Lacey, chair of Fight SMA Canada, her husband Shawn and their daughter Tori, who has been diagnosed with SMA, provided a practical overview of ‘living with a child with SMA’ from needed home modifications, to school considerations. Dr. Adam Rapoport, the Medical Director of the Pediatric Advanced Care Team at SickKids informed families of the support services their team is able to provide to their children and families. Karen Dunbar, Services Specialist for Ontario and Nunavut from Muscular Dystrophy Canada, provided a pragmatic, and informative overview of the services and supports provided by the organization to children and their families with SMA. Dr. Laura McAdam, reviewed the Canadian Neuromuscular Disease Registry, established with the aim of helping clinicians and scientists improve clinical care of children with neuromuscular disease. There were also sessions focused on caring for a child with a chronic disease, increasing independence of adolescents with chronic disease as well as a break out session just for teenagers with SMA.”

Angela McGonigal, whose son Owen is affected by SMA, thought that the day had many great aspects including the health information shared, and the opportunity to establish networks and bonds with others in the same situation.

“Brian Weaver is a Respiratory Therapist who worked closely with Dr. Bach.  He is a strong proponent of cough assist machines for SMA patients.  He advised that when SMA kids are sick, they can utilize the cough assist machine every 3 hours during the day,” remembers Angela. “He recommends avoiding oxygen therapy as it masks ventilation issues such as secretions.  He encourages chest therapy and recommends having the torso higher than the head to facilitate drainage.”

Muscular dystrophy Canada’s very own Services Specialist for Ontario and Nunavut, Karen Dunbar’s information was also very helpful. “She provided an overview of the home renovation funding and the equipment program and the event was well attended by families, doctors, therapists, nurses, social workers and others involved in SMA patient care.  It was a great opportunity to learn, reflect and connect,” says Angela.

Dr. Amin also heard high praises from attendees, “One participant told me they felt ‘informed, inspired and connected.’ At the end of the day, we were also asked, ‘When are you going to have this next year?’”

Everyone who attended, from clients, parents, caregivers and medical professionals, all learned new things and made new connections. Dr. Amin had one particular memory stand out: “At the end of the day, we had a panel discussion led by adolescents and young adults with Spinal Muscular Atrophy. The audience was able to ask these individuals questions, and the responses were insightful and inspiring.  One young adult with SMA was asked, ‘What is the one thing you would want to change in life if you were able?’ Her response was to be able to change the way people looked at her in a wheelchair. She hoped for a world with an increasing acceptance of children who were different. Her words resonated with everybody who was in the room. As healthcare providers, this is one goal we need to help work towards achieving for these children.”

“We hope that the attendees came away with an increase in knowledge regarding the respiratory management and complications of a child with SMA,” says Dr. Amin. “We also wanted to increase the awareness of the effect of having a child with SMA has on the family, specifically the social and psychosocial consequences of the condition at life’s many transition points. We also hope that we were able to break down barriers and foster open discussions between health care professionals, caregivers, and children both at the event and in the future. Of paramount importance is our hope that we were able to promote a support network for families with children with SMA. We also wanted to fully inform families about the registry as well as other research in SMA in order that they may participate in research if they wish to do so.”

The full house and outstanding feedback from attendees highlights the importance of partnerships between hospitals, care facilities, research centres and not-for-profit organizations, and why sharing information and resources – not only from a research standpoint, but also in terms of services – is so vital to the care of those with neuromuscular disorders. “The Hospital for Sick Children, Holland Bloorview Rehabilitation Hospital, and Muscular Dystrophy Canada all strive to provide better patient centered care to the children and their families,” Dr. Amin explains. “Strong partnerships are essential across hospitals and NFPs to facilitate transitions from hospital to home as well as to develop and support these families in their communities,” says Dr. Amin.  “For example, the funding support of Muscular Dystrophy Canada towards respiratory technology facilitates the purchase of mechanical insufflator-exsufflators (cough assists) for our patients.  This improves their overall pulmonary health and helps to keep these children in school and out of hospital.”

Of course, that is everyone’s ultimate goal.

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The Spinal Muscular Atrophy Family Education Day was hosted by SickKids Hospital and Holland Bloorview Rehabilitation Hospital. This event was made possible by the generous support of Muscular Dystrophy Canada, the SickKids Foundation, Fight SMA Canada and Lifetronics.

For more information on SMA and other neuromuscular disorders, please click here. To learn more about programs offered by Muscular Dystrophy Canada, please contact a Services Specialist in your region.

To learn more about the Canadian Neuromuscular Disease Registry, click here.

 

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Partenariats en action

cliniccropL’année dernière, une nouvelle initiative éducationnelle s’est tenue grâce au soutien de Dystrophie musculaire Canada. En collaboration avec deux hôpitaux pour enfants de Toronto, le Holland Bloorview et le SickKids, cette initiative a pris la forme d’une journée familiale pour les enfants, jeunes adultes et adultes atteints d’amyotrophie spinale (AS) ainsi que pour leurs parents et aidants. La Dre Reshma Amin explique comment l’idée de cette journée a vu le jour.

« Je travaille à la clinique de soins respiratoires complexes du Hospital for Sick Children avec le Dr Theo Moraes, Cathy Daniels, infirmière praticienne, Faiza Syed, inhalothérapeute, et Ellie Lathrop, travailleuse sociale. Notre équipe assure le suivi d’enfants qui dépendent des technologies respiratoires telles que les appareils à deux niveaux de pression positive et la ventilation invasive. Plusieurs de ces enfants ont une maladie neuromusculaire comme l’amyotrophie spinale et sont souvent suivis en même temps au Holland Bloorview Rehabilitation Hospital pour leurs soins neuromusculaires par la Dre Laura McAdam, coprésidente de cet événement, et son équipe. Un jour, à la clinique, pendant que nous discutions de la transition vers les soins de santé pour adultes, un adolescent a mentionné qu’il voulait aller à l’université et qu’il aimerait bien pouvoir parler à un autre jeune adulte atteint d’AS déjà à l’université. Ceci nous a fait penser qu’il serait intéressant d’organiser une activité familiale éducationnelle pour faciliter les échanges entre enfants atteints d’AS et leur permettre de parler de questions touchant « la vraie vie ».

L’activité a fait salle comble, avec une centaine de participants, la plupart de la région du Grand Toronto mais aussi de Thunder Bay (ON) et du Nouveau-Brunswick. L’objectif de la journée? « Sensibiliser davantage le milieu à l’amyotrophie spinale et mieux informer les aidants et les enfants atteints d’AS », explique la Dre Amin. « Nous voulions plus particulièrement rehausser les connaissances des familles et des enfants en ce qui concerne les impacts médicaux et psychosociaux de la maladie. Nous voulions aussi offrir un lieu de rencontre permettant de favoriser des relations de soutien entre les familles touchées. Enfin, nous voulions que les enfants et leur famille soit informés des recherches scientifiques en cours sur l’amyotrophie spinale. »

La journée a consisté à écouter de nombreux conférenciers, à participer à des discussions et à réseauter.

« Nos conférenciers sont reconnus internationalement pour leur travail dans le domaine de l’amyotrophie spinale. Le Dr John Bach, professeur de physiatrie et de réadaptation à l’University Hospital de Newark, au New Jersey, qui possède une expérience sans pareille des personnes atteintes d’AS, a fait un survol de la gestion respiratoire de l’AS qui avait de quoi faire réfléchir. Brian Weaver, MS, RRT-NPS, RPFT, inhalothérapeute et chef de département du Kimble Medical Center de Newark au New Jersey, a présenté une revue pratique des complications respiratoires et du rôle des technologies respiratoires pour les enfants atteints d’AS. Le Dr Alex Mackenzie, scientifique et clinicien du Children’s Hospital of Eastern Ontario, a offert une revue de haut niveau de la recherche sur l’amyotrophie spinale et des essais cliniques pour enfants qui en sont atteints, présentement en cours et prévus. Il y avait beaucoup d’autres conférenciers, dont Tracy Lacey, président de Fight SMA Canada, son mari Shawn et leur fille Tori, atteinte d’AS, qui ont donné un aperçu pratique de la vie avec un enfant atteint d’AS, depuis les modifications requises au domicile jusqu’aux questions touchant la scolarisation. Le Dr Adam Rapoport, directeur médical de l’équipe de soins pédiatriques avancés du SickKids Hospital a renseigné les familles sur les services de soutien que l’hôpital offre aux enfants et aux familles. Karen Dunbar, spécialiste des services de Dystrophie musculaire Canada pour l’Ontario et le Nunavut, a offert un survol pragmatique et informatif des services et mesures de soutien que son organisme offre aux enfants et familles touchées par l’AS. La Dr Laura McAdam a parlé pour sa part du Canadian Neuromuscular Disease Registry, un registre de patients établi en vue d’aider les cliniciens et les scientifiques à améliorer les soins cliniques des enfants atteints de maladies neuromusculaires. Il y a aussi eu des sessions sur la façon de s’occuper d’un enfant atteint d’une maladie chronique, d’améliorer l’autonomie des adolescents qui ont une maladie chronique ainsi qu’un atelier réservé aux adolescents ayant l’AS. »

De l’avis d’Angela McGonigal, dont le fils, Owen, a l’amyotrophie spinale, la journée comportait de nombreux aspects intéressants, notamment le partage d’information sur la santé et la possibilité de réseauter avec des gens qui sont dans la même situation.

« Brian Weaver est un inhalothérapeute qui a travaillé étroitement avec le Dr Bach. C’est un ardent défenseur du recours aux appareils d’assistance à la toux pour les patients atteints d’AS. Lorsqu’un enfant AS est malade, il conseille d’utiliser l’appareil d’assistance à la toux aux trois heures pendant la journée, rappelle Angela. Il recommande aussi d’éviter l’oxygénothérapie puisqu’elle masque les problèmes de ventilation tels que les sécrétions. Il encourage la physiothérapie respiratoire et recommande de positionner le torse plus haut que la tête pour faciliter le drainage. »

L’information fournie par Karen Dunbar, la spécialiste des services de Dystrophie musculaire Canada pour l’Ontario et le Nunavut, a aussi été très utile. « Elle a parlé du financement disponible pour l’adaptation du domicile et du programme d’aides techniques. Les familles, médecins, thérapeutes, infirmières, travailleurs sociaux et autres personnes concernées par le suivi des patients AS étaient tous fort bien représentés. Ce fut une excellente occasion de s’informer, de réfléchir et de réseauter », ajoute Mme McGonigal.

La Dre Amin a aussi entendu des commentaires très positifs chez les participants. « L’un d’eux m’a dit qu’il se sentait informé, inspiré et connecté. À la fin de la journée, on nous a aussi demandé quand se tiendrait cette activité l’année prochaine. »

Clients, parents, aidants et professionnels médicaux, tous les participants ont appris quelque chose de neuf et rencontré des gens intéressants. Un événement a plus particulièrement marqué la Dre Amin  « C’était à la fin de la journée, lors d’un débat réunissant un panel d’adolescents et de jeunes adultes atteints d’amyotrophie spinale. Le public pouvait leur poser des questions et leurs réponses étaient éclairées et inspirantes. On a demandé à une jeune adulte atteinte Quelle est la chose que vous voudriez changer dans votre vie si vous le pouviez? Sa réponse : changer la façon dont les gens la regardent dans son fauteuil roulant. Elle rêve d’un monde où les enfants qui sont différents seraient mieux acceptés. Ses mots ont trouvé un écho chez tous ceux qui étaient présents. En tant que professionnel de la santé, voilà un objectif que nous devons tous contribuer à réaliser, pour le bien de ces enfants. »

« Nous espérons que les participants sont repartis avec de meilleures connaissances au sujet des soins et des complications respiratoires chez les enfants atteints d’amyotrophie spinale », ajoute la Dre Amin. « Nous voulions aussi les sensibiliser davantage à l’impact qu’a un enfant AS sur la famille, et plus particulièrement aux conséquences sociales et psychosociales de la maladie au moment des différentes transitions qui surviennent au cours d’une vie. Nous espérons aussi avoir favorisé une discussion plus ouverte entre les professionnels de la santé, les aidants et les enfants, lors de cette rencontre mais aussi pour l’avenir. Surtout, nous espérons avoir encouragé l’établissement et le renforcement d’un réseau de soutien pour les familles des enfants atteints d’AS. Enfin, nous voulions fournir aux familles une information complète sur le registre et sur d’autres recherches sur la maladie afin qu’ils puissent choisir d’y participer ou non en toute connaissance de cause. »

La très forte participation et les commentaires unanimement positifs de cette journée soulignent l’importance de la collaboration entre les hôpitaux, les centres de soins, les centres de recherche et les organismes sans but lucratif et illustre l’importance pour le suivi des personnes qui vivent avec une maladie neuromusculaire de la mise en commun de l’information et des ressources, non seulement pour ce qui est de la recherche mais aussi en termes de services. « Qu’il s’agisse du Hospital for Sick Children, du Holland Bloorview Rehabilitation Hospital ou de Dystrophie musculaire Canada, nous nous efforçons tous de fournir aux enfants et à leur famille de meilleurs soins centrés sur les patients », explique la Dre Amin. « Il est essentiels que des partenariats solides soient établis entre tous les hôpitaux et les OSBL pour faciliter les transitions de l’hôpital à la maison ainsi que pour soutenir ces familles dans leur milieu propre », ajoute la Dre Amin. « Ainsi, le soutien financier de Dystrophie musculaire Canada pour les technologies respiratoires facilite l’acquisition d’appareils d’assistance mécanique à la toux pour nos patients, ce qui améliore leur santé pulmonaire dans son ensemble et contribue à garder ces enfants à l’école et hors de l’hôpital. »

Et bien sûr, c’est là l’objectif ultime pour tous.

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Le Spinal Muscular Atrophy Family Education Day a été organisé conjointement par le SickKids Hospital et le Holland Bloorview Rehabilitation Hospital. Cette journée a été rendue possible par le généreux soutien de Dystrophie musculaire Canada, la SickKids Foundation, Fight SMA Canada et Lifetronics.

Pour plus d’information sur l’amyotrophie spinale et sur les autres maladies neuromusculaires, cliquez ici. Pour en savoir plus sur les programmes qu’offre Dystrophie musculaire Canada, nous vous invitons à contacter notre spécialiste des services de votre région.

Filling Boots in Sudbury

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Fire Fighters organize events year-round and help raise funds in support of those affected by neuromuscular disorders.   The most successful fundraiser is the Fill the Boot.  Fire Fighters hold out their boots in parking lots, in front of stores and even on the streets and ask the generous public if they would like to voluntarily make a donation.  The Sudbury Professional Fire Fighters Association Local 527 has been involved with Muscular Dystrophy Canada since 1972, and to date have raised $471,071.74! This year, with the help of local resident Kathy, Sudbury PFFA raised $34,120.20!

Kathy’s family is affected by neuromuscular disorders so she is very passionate about the great work Fire Fighters do for those affected.  She saves her money so she can visit their annual Fill the Boot and give a generous donation.  As a way to thank her, the Fire Fighters from Local 527 invited Kathy to spend an afternoon with them in their main station in late November.

IMG_2322Kathy says, “From the extensive tour of the station, to the company of such thoughtful individuals who give so freely to a cause they believe in, to the honour of breaking bread with such special people, to my privileged ride on the most mammoth piece of equipment, I’ve ever ridden in, to the totally unexpected gift of the magnificent flowers and the very touching greeting card– my word, how special you all made this woman feel yesterday!

I was particularly delighted to see that one of the pictures captured precisely the little girl thrill I felt to find myself on the hook and ladder!

My home wafts with the delightful smell of those glorious flowers and when I close my eyes, I smile and remember all those handsome faces with whom I shared time on November 28th.

Scott, please ensure that your colleagues in SPFFA Local 527 know that they qualify as heroes because they care so deeply about the community they serve. It was a pleasure to meet so many of the Fire Fighters who help Fill the Boot.  I trust that I communicated my deep gratitude to all present for their commitment to finding a cure to those neuromuscular disorders, including the variety that affects my family. Hopefully, the members now have a personal ‘face’ to attach to their efforts!

We have a target to beat next September… I’ve already begun saving!”

IMG_2316Scott Roper, the Muscular Dystrophy Canada Chairperson for Sudbury PFFA responded to Kathy by saying, “­­­­­­ You are most welcome and it was nice to have finally met you.  Thursday was just a small token to what you have given back to this community over the last few years and for that, we are thankful for it.  I was saying to my wife the other night, seeing you on Thursday and watching how happy you were, makes my decision 15 years ago to become a Fire Fighter, worth every penny and heartache to achieve my goal.  Helping out in the community is the most beneficial part of our job and I wouldn’t trade it for anything.

Thanks again and look forward to seeing you next year, at the Fill the Boot.  Maybe you could collect some money with us for a few minutes.”

Thank you to Kathy and the Fire Fighters from Sudbury PFFA Local 527 for sharing your amazing experience with us! We are grateful for your generosity and to the people of Sudbury who donated to the Fill the Boot campaign.

 

Then and Now

stephen rysen-2012 walk for md

Living with Muscular Dystrophy has to involve a positive attitude. There are lots of obstacles with Muscular Dystrophy that include the loss of strength and mobility, loss of friends with Muscular Dystrophy, fear and depression. But there are ways to overcome this by becoming proactive and helping others with Muscular Dystrophy. Muscular Dystrophy Canada has provided me the opportunity to become proactive by allowing my participation in their fundraising events and Muscular Dystrophy Firefighter Conventions. Therefore it has provided positive energy for me and allowed my dream to come true as a public speaker.

Stephen Rysen and Tina Rysen- 1995 FF ConferenceI started speaking at 12 when I became a Muscular Dystrophy Canada Campaign Assistant which involved an interview for the annual Labour Day telethon to raise funds for Muscular Dystrophy. Although it did not appear on television it opened the doors for more opportunities for involvement with Muscular Dystrophy Canada. I participated in my first Muscular Dystrophy Firefighter Convention and did my first ever speech. The speech is one I will never forget. I was on stage after watching a comedian, which caused me laugh during my speech when I lost track from the notes I was reading from. But I was able to improvise and finish my speech. Furthermore I rebounded with a speech at a charity golf tournament for Muscular Dystrophy Canada to say thanks to the people for attending and the people that made it happen.  I have done four other presentations at Muscular Dystrophy Firefighter Conventions which included 2 speeches for the Muscular Dystrophy Canada career program named Bridges to the Future and 2 speeches about life with Muscular Dystrophy. The two speeches about my life story with Muscular Dystrophy have been successful that I have gone to the Justice Institute of British Columbia to talk to future firefighters about the firefighters’ tradition of fundraising for Muscular Dystrophy Canada. Speaking at an early age has given me the confidence to still speak at conferences and speaking engagements today.

I have given back to Muscular Dystrophy Canada: by fundraising, by visiting and advertising boot drives, by shooting a client video, by participating in a Shell Buzzy fundraiser and doing a ceremonial puck drop between Ryan Walter and Ron Duguay at a celebrity pro-am charity hockey game. Muscular Dystrophy Canada is a helpful foundation that I am thankful for because of their efforts to fight this disease. But I’m also here to help others live Muscular Dystrophy. Therefore I assist Muscular Dystrophy Canada by attracting more donations by providing awareness through fundraising and public speaking.

stephen rysen-2011 walk for mdWhen fundraising or going to speaking engagements it gives me a chance to provide uplifting positive energy onto others. Therefore people want to know where the money is going and how to receive more donations. People with Muscular Dystrophy need positive energy to shine over the dark cloud. Talking about the negative parts of Muscular Dystrophy provides me the strength to provide positive energy to become proactive by attracting others to help people with Muscular Dystrophy. Furthermore getting money donated to this organization can provide abilities with equipment, career counseling, support groups, support programs and provide much needed research programs and trials. Being able to talk to people makes me fortunate to continue my dream of speaking and provides me positive energy to be thankful to be alive because of people being proactive against Muscular Dystrophy.

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Stephen Rysen is a 30 year old with Duchenne muscular dystrophy. He has been volunteering with Muscular Dystrophy Canada since 1995, and continues to be spread awareness today by getting involved in the fire department, speaking to new fire fighter recruits, speaking at fire fighter conferences, and fundraising in the Walk for Muscular Dystrophy. Stephen has been named the 2014 Vancouver Safeway Walk for Muscular Dystrophy Ambassador. His positive attitude continues to inspire everyone around him. 

Register for a Walk near you today!

Team AMC Bears

Logan_for webTeam AMC Bears has participated in the Regina Safeway Walk for Muscular Dystrophy since 2012.  Front and center of the team is the inspiration why Team AMC Bears participate in the Walk, Logan Heathcote.

Logan was born with Arthrogryposis Multiplex Congentia  (AMC) and at the tender age of 2.5 years, Logan remains an inspiration to not only his team, but so many others he has met in his role of Walk Ambassador of 2013.

Last year’s Walk season provided Logan and his family many opportunities to create awareness not only about AMC and other neuromuscular disorders, but disabilities in general.  AMC Bears accepted the role of ambassador and used this role to connect with the local community of Regina in any opportunity they could. Logan’s cheery smile warmed the hearts of many persons as he thanked local  Lowe’s Canada, Menchies and Safeway managers and employees for their support of person with neuromuscular disorders.

To assist in their fundraising, Team AMC Bears hosted a series of fundraisers for their team. Hosting a Gymkhana event, and Paintball fundraiser were just a few of the efforts that this team did to raise awareness and contribute to their donation of over $5800.

Logan’s Mom Tahnee Dubois was interviewed at one of the fundraisers they hosted for the Walk and shared that “if anything, fundraising has inspired me to go above and beyond to the best I can for Logan, I also want to raise awareness about neuromuscular disorders for other families who are faced with this diagnosis in the future.”