Mary Ann Wickham: Foundation of Services

La version française suit.

Mary Ann Wickham was one of the first volunteers for the Muscular Dystrophy Association of Canada, and her unique contributions to the organization have shaped the Services departments. Her unique approach gave the newly formed MDAC a stronger purpose, and presence. Research was the base of the organization, but providing information, equipment, and care for those affected by neuromuscular disorders rounded out the MDAC. We honour an exceptional volunteer every year in her name with the Mary Ann Wickham Award for Volunteer of the Year.

Below is an excerpt from Connections (MDAC newsletter,) issue from September 1989:

The Lady With The Lift

Thirty-five years ago Mary Ann Wickham got off a bus on the corner of Bay and Wellington Streets in Toronto, looked across the street, and happened to see a sign in a store window – “The Muscular Dystrophy Association of Canada.”

“I knew nothing about muscular dystrophy, but I went in an asked the people there if I could do some volunteer work,” said Wickham, who had just moved to Toronto in 1954 and was working full time as a nurse. “The next week I went to my first Toronto Chapter meeting. Dr. David Green was there, and so was Arthur Minden. When they heard of my nursing background, they asked if I would mind visiting some of the people in Toronto who had muscular dystrophy.”

So began, in these chance circumstances, a new chapter in Mary Ann Wickham’s life that would ultimately determine her future career. But these same lucky circumstances would also help to shape the future of the Muscular Dystrophy Association of Canada as we know it today, turning it into an organization that not only supports medical research, but offers services and information to its clients as well.

For   eleven years – from 1954 to 1965 – Mary Ann Wickham was the Client Services staff for the Muscular Dystrophy Association of Canada, always on a volunteer basis. But she also became deeply involved in other Association activities, too: helping to organize social events, starting new MDAC Chapters in other Ontario cities, travelling throughout the province to talk to clubs and groups, and ultimately becoming a member of the MDAC Board.

But Wickham’s primary commitment to MDAC was always visiting clients, at least two nights a week and all day Saturday.

“I kept the equipment in my basement,” she recalled. “If anybody needed a wheelchair or a Hoyer lift, I would deliver it. There were about 30 clients in Toronto then – and it quickly became very frustrating, because I was really not able to visit them all on a routine basis. I ended up with a map on the wall of my house with little pins showing where everyone was, so if I had to make a call in a certain district, I would always make two or three other stops in the vicinity to see how everyone was doing.

“Thirty-five years doesn’t really seem that long ago,” Wickham said, “but compared to those days, the information we have today about neuromuscular diseases and the change in attitudes towards disabled people seem absolutely incredible.”

In 1954 there was no public funding of wheelchairs, for example – “MDAC had to buy all of them,” said Wickham. “And we recycled them, too, again and again. No one had training in fitting wheelchairs either. The only choice was between wheelchairs for adults and those for children, with perhaps a pillow on their back or on the seat to try and make things a little more comfortable.

“Almost no one knew anything about genetics back then or had any notion that muscular dystrophy might be inherited,” she recalled. “One family I spent a lot of time with had three sons with Duchenne muscular dystrophy and two daughters with peroneal muscular atrophy. The poor mother just thought it was bad luck that all these sad things had happened to her family.

“There was no knowledge in the general public that there was more than one kind of muscular dystrophy – everyone just called them all ‘creeping paralysis.’ Many people even thought muscular dystrophy was contagious. Sometimes at the information booths we set up at the Canadian National Exhibition or at local fairs, people would step back, saying they didn’t want to take any brochures, because they might get muscular dystrophy. Families sometimes told me, too, that their child was being kept out of school because other parents were afraid their own children might catch muscular dystrophy.”

Attitudes toward disabled people, even on the part of families who loved them and governments who wanted to help them, have gone through a complete metamorphosis in the past 35 years, too, according to Wickham.

“There was no thought of preparing a child with muscular dystrophy to go to work or to live independently,” she remembered. “Parents just wanted to keep their children at home, to make them as comfortable and happy as possible. Most schools and universities didn’t accept disabled students anyway – there was no transportation available, and all the public buildings were inaccessible.”

It was in this general climate that Mary Ann Wickham began her years of volunteer work on behalf of those people with neuromuscular diseases. She brought her ideas and her experiences with her to MDAC Board meetings in Toronto, always arguing one constant point: to support medical research is extremely important, but the services MDAC could offer its clients were equally important.

“I talked about the human side of my work, about the joy of being able to give a wheelchair to a boy who had never been able to go out shopping with his family… and I think that was what finally convinces many of the Board members.”

In 1965, for the first time in its history, MDAC hired a full time Patient Services staff person, a nurse, who worked out of the Toronto office. Today there are 16 Client Service staff in all regions of Canada, providing the equipment, advice, and information Mary Ann Wickham so ably dispensed all those years as a volunteer.

“I feel gratefully today for my past with the Muscular Dystrophy Association of Canada, that it has been part of my life to feel I was able to contribute something to muscular dystrophy,” said Wickham. “I think the greatest joy I have today is meeting a person who tells me – ‘Years ago you were the first person who contacted me after we had our diagnosis of muscular dystrophy, and I feel very close to you.’”

What was it that Mary Ann Wickham told families 35 years ago when she visited them at night soon after their child was diagnosed?

“Usually I would just sit down and chat with them,” she remembered. “On that first visit, I would tell them as much about the disorder as they were prepared to ask, and no further. Most of all I would say, ‘Please remember, we are here… call if you have any questions. Remember… you are not alone.’”

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Today, Muscular Dystrophy Canada is still committed to providing excellent services to those affect by neuromuscular disorders, their families and communities. Please register to stay connected and to receive services.

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Mary Ann Wickham, fondatrice des services aux clients

Mary Ann Wickham fut l’une des premières bénévoles de l’Association canadienne de la dystrophie musculaire et sa contribution a façonné l’organisation des services aux clients. Son approche a aussi renforcé l’objectif et la présence de la toute nouvelle organisation. La recherche était la raison d’être de l’ACDM, mais offrir de l’information, des aides techniques et des soins aux personnes atteintes de maladies neuromusculaires venait compléter sa mission. Chaque année, nous remettons le prix Mary-Ann-Wickham à un ou une bénévole d’exception.

Voici un extrait du numéro de septembre 1989 de Connexions, le bulletin d’information de l’ACDM.

La dame au lève-personne

Il y a 35 ans, Mary Ann Wickham descendit de l’autobus à l’angle des rues Bay et Wellington à Toronto. L’enseigne d’une vitrine de l’autre côté de la rue accrocha son regard : « L’Association canadienne de la dystrophie musculaire ».

« Je ne savais rien de la dystrophie musculaire, mais j’ai poussé la porte et j’ai demandé aux gens qui s’y trouvaient s’ils avaient besoin de bénévoles », raconte M^me Wickham, qui venait tout juste de déménager à Toronto en 1954 et travaillait à plein temps comme infirmière. « La semaine suivante, j’assistais à ma première rencontre de la section locale de Toronto. Le D^r David Green était là, ainsi qu’Arthur Minden. Lorsqu’ils ont su que j’étais infirmière, ils m’ont demandé si j’accepterais de visiter certaines personnes de Toronto atteintes de dystrophie musculaire. »

Et c’est dans ces circonstances fortuites qu’a débuté un nouveau chapitre de la vie de Mary Ann Wickham, un chapitre qui allait un jour déterminer l’avenir de sa carrière. Mais ces mêmes circonstances allaient aussi aider à façonner l’avenir de l’Association canadienne de la dystrophie musculaire telle que nous la connaissons aujourd’hui, la transformant en un organisme qui non seulement appuie la recherche médicale mais offre aussi des services et de l’information à ses clients.

Pendant onze ans, de 1954 à 1965, Mary Ann Wickham fut, à elle seule, le service aux clients de l’Association, toujours à titre bénévole. Mais elle était aussi fortement impliquée dans d’autres activités de l’organisme, aidant à organiser des événements sociaux, mettant sur pied de nouvelles sections locales de l’ACDM dans d’autres villes de l’Ontario, parcourant la province pour faire des présentations à divers clubs et groupes et, au bout de quelques années, devenant membre du conseil d’administration de l’ACDM.

Mais son premier engagement envers l’ACDM fut toujours la visite des clients qu’elle effectuait au moins deux soirs par semaine et toute la journée du samedi.

« Les aides techniques étaient entreposées dans mon sous-sol », se rappelle-t-elle. « Si quelqu’un avait besoin d’un fauteuil roulant ou d’un lève-personne Hoyer, je m’occupais de la livraison. À l’époque, il y avait une trentaine de clients à Toronto et, très rapidement, la situation est devenue très frustrante puisque je ne pouvais pas vraiment les visiter tous régulièrement. Chez moi, j’avais une carte fixée au mur, avec des épingles indiquant où les clients étaient situés et, lorsque je devais faire une visite dans un certain secteur, je m’arrangeais toujours pour faire deux ou trois autres arrêts dans les environs pour voir comment tout le monde allait. »

« Trente-cinq ans, ça ne semble pas si loin que ça, dit M^me Wickham, mais comparé à ces années-là, ce que nous savons aujourd’hui sur les maladies neuromusculaire et le changement d’attitude envers les personnes handicapées semblent absolument incroyable. »

Ainsi, en 1954, il n’y avait pas de financement public pour des fauteuils roulant. « L’ACDM devait tous les acheter », de dire M^me Wickham. « Et nous les recyclions aussi, encore et encore. Personne n’était formé non plus pour ajuster ces fauteuils. Le seul choix était un fauteuil pour adulte ou un fauteuil pour enfant, avec peut-être un coussin pour le dos ou le siège pour essayer de le rendre un peu plus confortable. »

« À l’époque, très peu de gens avaient entendu parler de génétique et personne ne se doutait que la dystrophie musculaire puisse être une maladie héréditaire », se rappelle-t-elle. « Dans une famille avec laquelle j’ai passé beaucoup de temps, il y avait trois garçons atteints de dystrophie musculaire de Duchenne et deux filles avec la maladie de Charcot-Marie-Tooth. La pauvre mère croyait que tous ces malheurs qui s’abattaient sur sa famille n’étaient dus qu’à la malchance. »

« Le public ignorait entièrement qu’il existait plus d’une forme de dystrophie musculaire. Tout le monde appelait ces maladies paralysies progressives. Plusieurs pensaient même que la dystrophie musculaire était contagieuse. Parfois, aux stands d’information que nous installions à l’Exposition nationale canadienne ou à des foires locales, les gens reculaient en nous voyant, disant qu’ils ne voulaient pas prendre de dépliants de peur d’attraper la dystrophie musculaire. Certaines familles m’ont aussi confié qu’on empêchait leur enfant de fréquenter l’école parce que les autres parents craignaient que leurs propres enfants attrapent la maladie. »

Selon M^me Wickham, les attitudes envers les personnes handicapées, même celles des familles qui les aimaient et les gouvernements qui voulaient les aider, se sont complètement métamorphosées au cours des 35 dernières années.

« On ne pensait pas à préparer un enfant atteint de dystrophie musculaire à aller travailler ou à vivre de façon autonome », se rappelle-t-elle. « Les parents voulaient seulement garder leurs enfants à la maison et veiller à ce qu’ils soient le plus confortable et le plus heureux possible. De toute façon, la plupart des écoles et des universités n’acceptaient pas d’étudiants handicapés. Il n’y avait pas de transport disponible et aucun édifice public n’était accessible. »

C’est dans ce climat général que Mary Ann Wickham a commencé ses nombreuses années de travail bénévole auprès des personnes atteintes de maladies neuromusculaires. Elle a apporté ses idées et ses expériences à la table du conseil d’administration de l’ACDM à Toronto, défendant toujours la même idée : soutenir la recherche est extrêmement important, mais les services que l’ACDM pouvait être en mesure d’offrir à ses clients étaient tout aussi importants.

« Je parlais du côté humain de mon travail, de la joie de pouvoir donner un fauteuil roulant à un garçon qui n’avait jamais pu sortir avec sa famille… et je crois que c’est ce côté humain qui a finalement convaincu plusieurs des membres du conseil. »

En 1965, pour la première fois de son histoire, l’ACDM engageait sa première employée à plein temps pour ses services aux clients, une infirmière qui travaillait au bureau de Toronto. Aujourd’hui, les services aux clients peuvent compter sur un personnel de 16 personnes réparties dans toutes les régions du Canada pour fournir les aides techniques, les conseils et l’information que Mary Ann Wickham a dispensé avec tant de dévouement pendant toutes ses années à titre bénévole.

« Je suis reconnaissante aujourd’hui de mon passé avec l’Association canadienne de la dystrophie musculaire, reconnaissante que l’ACDM ait fait partie de ma vie et m’ait permis de sentir que je pouvais faire ma part pour la dystrophie musculaire, dit-elle. Je crois que la plus grande joie pour moi aujourd’hui c’est de rencontrer une personne qui me dit : Il y a des années, vous avez été la première personne à me contacter après que nous ayons reçu notre diagnostic de dystrophie musculaire et je me sens très près de vous. »

Que disait donc Mary Ann Wickham il y a 35 ans aux familles qu’elle visitait le soir, peu de temps après que leur enfant ait reçu son diagnostic?

« Généralement, je ne faisais que m’asseoir et parler avec eux, dit-elle. Lors de la première visite, je leur en disais autant sur la maladie qu’ils me demandaient, mais pas plus. Surtout, je leur disais : N’oubliez pas que nous sommes là… appelez-nous si vous avez des questions. Vous n’êtes pas seuls. »

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Dystrophie musculaire Canada est toujours engagée à fournir d’excellents services aux personnes atteintes de maladies neuromusculaires, à leurs proches et à leurs milieux. Nous vous invitons à vous inscrire pour garder le contact et recevoir des services.

From the Very Start: Helmer Reddick, Fire Fighters and Muscular Dystrophy Canada

La version française suit.

The Edwardsburgh/Cardinal Fire Department Station #1, in the Leeds and Grenville county of south-eastern Ontario,  was formed in October of 1951. About 25 of the township’s 400 residents joined up to be Fire Fighters, Helmer Reddick was one of those 25. Helmer recalls some of his first colleagues’ day jobs:  an Ottawa Roughrider, electrician, plumber and a politician. Now retired, and 90 years-old, Helmer still gives his time to help with administrative duties and to organize the Department’s Fill the Boot campaigns for Muscular Dystrophy Canada.

The Edwardsburgh/Cardinal Fire Department Station #1 has been fundraising for Muscular Dystrophy Canada since our first year in 1954-1955 to, “help out a good cause,” and, “it’s paid off with all of the progress in research.” One of the challenges Helmer found over the first few years was that people did not know where the money was going. This has changed for the better with improved communication and more awareness, especially through the Jerry Lewis Labour Day Telethon.

Though Helmer retired in 1988, he still found that he had the desire to help out around the Fire Department and with the fundraising for Muscular Dystrophy Canada. Over the years he has found some good tricks to make sure the Fill the Boot Drive goes off without a hitch – one involves getting your granddaughters to sort coins, and the other is to make sure you get the strongest Fire Fighters to hold the boots because they can get heavy:

“One time I had collected in a picnic basket. I went to lift up the basket, and the thing weighed so much that the handles broke off! I had to pick up the coins, get them sorted and rolled, and took them to the bank in a wheelbarrow,” Helmer remembers.

It takes about a week to prepare for a Fill the Boot campaign, the most prominent being during the parade at the Spencerville Fair which draws about 25,000 people now, and has been an annual event since 1855. Some of Helmer’s tactics for donations include going on air at the local radio station, show off the Fire Fighter equipment, and decorating the Department’s first fire truck for the parade. Six Fire Fighters walk on either side of the truck and gather donations. After the boots are full, the money is counted over a span of about four to five hours (with some breaks in between.) Once all the money is rolled and delivered, Helmer sets up a thank you dinner for all the Fire Fighters who volunteered – a nice BBQ feast!

Though both fire fighting and Muscular Dystrophy Canada have both changed over the past 60 years, the partnership between the organization and Canadian Fire Fighters remains strong. The Edwardsburgh/Cardinal Fire Department Station #1 has raised $91,980 to date and has worked 60 years with us to help make muscles move!

Thank you Helmer for sticking with us for 60 years!

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Une collaboration de la première heure : le pompier Helmer Reddick et Dystrophie musculaire Canada

La caserne n^o 1 du Service d’incendie d’Edwardsburgh/Cardinal, dans le comté de Leeds et Grenville du sud-est de l’Ontario, a été formée en octobre 1951. Quelque 25 des 400 résidants de la municipalité se sont alors joints aux pompiers. Helmer Reddick était l’un de ceux là. Il se souvient du travail régulier de certains de ses premiers collègues : un joueur des Rough Riders d’Ottawa, un électricien, un plombier et un politicien. Aujourd’hui âgé de 90 ans, Helmer a pris sa retraite, mais continue de donner son temps pour aider aux tâches administratives et organiser les barrages routiers de ce service d’incendie pour Dystrophie musculaire Canada.

La caserne n^o 1 du Service d’incendie d’Edwardsburgh/Cardinal recueille des fonds pour Dystrophie musculaire Canada depuis la fondation de notre organisme en 1954-1955, « question d’appuyer une bonne cause et d’aider à faire avancer la recherche », de dire Helmer. L’un des problèmes qu’il rencontrait au cours des premières années, c’est que les gens ne savaient pas où allait l’argent. Depuis, cette situation a changé pour le mieux grâce à de meilleures communications et une plus grande sensibilisation, et plus particulièrement avec le Téléthon Jerry Lewis qui se tient le week-end de la fête du Travail.

Bien qu’Helmer ait pris sa retraite en 1988, il voulait encore donner un coup de main à son service d’incendie et continuer à aider à la collecte de fonds pour Dystrophie musculaire Canada. Au fil des ans, il a trouvé quelques bons trucs pour faire en sorte que les barrages routiers se déroulent sans problèmes, par exemple demander à ses petites-filles de trier la monnaie ou s’assurer de recruter les pompiers les plus forts pour tendre leurs bottes, parce qu’avec tous ces dons, celles-ci peuvent devenir très lourdes.

« Une fois, j’ai ramassé les dons dans un panier à pique-nique. Quand j’ai voulu le soulever, il était si lourd que la poignée s’est cassée! J’ai été obligé de ramasser les pièces de monnaie, de les trier, de les rouler et de les amener à la banque en brouette », se rappelle-t-il.

Il faut une semaine environ pour préparer un barrage routier. Le plus important est celui qui se tient à l’occasion du défilé dela foire de Spencerville, un événement qui a lieu chaque année depuis 1885 et qui attire aujourd’hui quelque 25 000 personnes. Helmer utilise toutes sortes de moyens pour recueillir des dons, comme passer sur les ondes de la station de radio locale, inviter le public à voir l’équipement d’incendie et décorer le premier camion d’incendie du Service pour le défilé. De chaque côté, six pompiers défilent et recueillent les dons. Une fois que leurs bottes sont pleines, il faut environ quatre à cinq heures pour compter l’argent, en prenant quand même quelques pauses. Une fois que tout l’argent est roulé et livré à la banque, Helmer convie tous les pompiers à un grand festin BBQ pour les remercier d’avoir participé au barrage routier!

Tant les pompiers que Dystrophie musculaire Canada ont bien changé au cours des 60 dernières années. Mais le partenariat entre l’organisme et les pompiers canadiens demeure toujours aussi fort. À ce jour, la caserne n^o 1 du Service d’incendie d’Edwardsburgh/Cardinal a recueilli 91 980 $, une collaboration à notre action musclée qui dure depuis 60 ans!

Merci Helmer d’être resté à nos côtés pendant toutes ces années!

PEI Fire Fighter volunteers to help others – as a Fire Fighter and Muscular Dystrophy Canada Supporter

Rod MacDonald

Rod MacDonald is the chief of the East River Volunteer Fire Fighters from Prince Edward Island.  He has a full time job with Atlantic Enterprise Limited as a lines men and operator.  But that’s not all! Rod is also the liaison to Muscular Dystrophy Canada (MDC) responsible for organizing all the fundraising and awareness activities the department holds.  Rod has been fundraising with MDC for about 12 years, and  got involved in the leadership role in 2007.  He really enjoys being in this leadership position because, as he says it’s fun!  It’s become an adrenaline rush for him to challenge himself and the department to see how much money can be raised.  As well, it can be a fun team building exercise for the members to get together outside of fire fighter duties.

Muscular Dystrophy Canada is close to Rod’s heart due to his continuing support of the cause, and the friends he has  met along the way. Rod has a friend who has a neuromuscular disorder whom he and fellow department members have known for over 20 years . Rod says, “To see this person at 20 walking, and now confined to a wheelchair sometimes is hard to take. This is where I get my motivation to push harder and to get other departments on the island to fundraise.”

Rod cites the best thing that’s happened to him through his MDC work was receiving a heartfelt thank you from a father from Los Angeles, California whose  three year old son has Duchenne muscular dystrophy (DMD) during our Rooftop Campout. He explains, “ It just puts a lump in your throat. It is just amazing on how good news travels.”

Rod’s favourite event has become  the Rooftop Campout.  East River’s first annual Rooftop Campout just happened on July 25 to 27^th. Fighters braved the wind, rain and heat for 3 days camping out on the roof of the gas bar at the Ultramar and Robin Donuts at the Scotchfort Reserve on St. Peters Highway.  Rod spent both nights in the elements, and fellow Fire Fighters rotated through the other nights.  There were 14 men and women from the department assisting with the event by collecting donations, sleeping over and stopping by in the middle of the night to drop donations in the boot.  Several news outlets covered the event including CBC and The Guardian, the local newspaper.

The Rooftop Campout exceeded Rod’s expectations and he couldn’t believe the number of people who stopped by to thank the fire fighters for their efforts.  In 48 hours, the Fire Fighters raised $5,800 from the campout – what makes this even more remarkable is that the money was raised in a community of approximately 200 people.

Way to go!

Day in the Life: Reg Bardsley, Walk for Muscular Dystrophy Volunteer Coordinator

The first North Okanagan Safeway Walk for Muscular Dystrophy was held this past Saturday, May 4^th in Vernon.  The event raised over $13,000! With over 100 people attending and seven Walk teams, the event was a success! Volunteer Walk Coordinator, Reg Bardsley, has an incredibly busy day making sure that the event runs smoothly. 

For almost 20 years Reg served on various Fire Departments and Rescue Units throughout British Columbia as a Fire Fighter/Rescue specialist. In 2002 he was diagnosed with Fasio-scapular-humoral Dystrophy, an adult onset type of muscular dystrophy that manifests with weakness at first then progressing to almost full wasting of the muscles. Reg was forced to retire from Fire fighting & Rescue. Since his diagnosis he has been an advocate of those with disabilities concerning access to transit and related handicap mobility issues.

Reg Bardsley

Reg’s Walk Day:

7:00 a.m. – Get up and have coffee (must have coffee it’s going to be a long day!) Even with all the planning I’d done, I’m thinking about all that needs to be done to make our Walk a successful day for all.

8:00 a.m. – Head off in my wheelchair loaded with items for the activities, signs for Muscular Dystrophy Canada and all the other necessary set up materials.  My wheelchair is pulling a trailer filled with stuff!

8:30 a.m. – Arrive at the venue to meet with Fermco Rentals for placement of the Porta-potties. Here comes Mike from the Lions Club to position the cook trailer for the lunch.  There are a lot of people and volunteers who make the event possible!

9:00 a.m. – Cindy and the Canada Safeway crew arrives to start setup. Five more volunteers arrive so we make our way down the walkway to place the Muscle Facts signs along the route for a scavenger hunt game.

9:30 a.m. – Firemen arrive and set up the tents, banners and flags. Tables & chairs are getting placed for the Scotiabank volunteer team to run the registration.

10:00 a.m. – Starting to jokingly think, “are we done yet?” Things are coming together though! I think we are ready, and here comes our MDC Fundraising Coordinator, Jeannine (after bit of airplane troubles she has arrived! I can stop worrying now!) I am having another coffee to celebrate her arrival lifting a great stress off of me.  Jeannine will be able to arrange the registration paperwork with the Scotiabank crew.

11:00 a.m. – Wheeling around getting volunteers to start running activities including lawn bowling and hoop toss being chased down by at least a dozen people, from volunteers to media and anyone else wanting to talk to the guy in charge. I did a TV interview with Shaw/Global BC then another with Kiss FM as well as taking pictures for the Morning Star newspaper. So this is what celebrities feel like!

12:00 p.m. – Lions and Safeway cooking hotdogs, firemen hanging balloons, Kiss Fm events crew wanting an interview, Vernon Mayor arrives to greet us and get ready for the ribbon cutting. Looking good!

12:30 p.m. – Now it’s time to assemble everyone for the opening speeches. Wow, what a turnout! It is great to see so many here. I do my speech welcoming everyone and get started on the official opening. There is a  red ribbon across the pathway which Walk participants Micaela Evans, Joey Christiansen and Jacob Brayshaw help Mayor Sawatsky cut.

1:00 p.m. – Walk for Muscular Dystrophy is happening! It is so exciting to see so many people walking and rolling, each with their own reasons for participating.

2:00 p.m. – Jeannine tells me that we have reached $13,000 in donations! WOOT! I am overwhelmed. We gather for the awards and closing ceremony. As we prepare our speeches I am thinking back to January when I thought if we could raise $5,000 we would be a success, now we are over double and it’s hard to fight the tears of joy at the totals. The smiles and the stories will stay with me for a long time.

3:00 p.m. – I am tired but today has been such a blessing, and now I am exhausted! I talk with Jeannine about future projects and what we can do to make next year’s Walk event even better.

4:00 p.m. – I am home now. Time to relax and reflect on the day and think of what was accomplished, so many challenges met and exceeded. So many people to thank their for their help and support. I think I will sleep well tonight after the excitement mellows. A great day!

Thank you all for your support and effort in making our first annual North Okanagan Safeway Walk for Muscular Dystrophy such a huge success!

Reg explains that his involvement with Muscular Dystrophy Canada as a volunteer and motivational speaker/educator has been a blessing to his own life in giving him a purpose and a chance to give back while still accepting the limitations of his disability.

As a client of MDC Reg has received assistance in the form of specially constructed leg braces and recently, when the braces no longer served his needs, a wheelchair that he would have otherwise not been able to afford. Reg explains, “the wheelchair has granted me a new outlook on my life by allowing me the freedom and independence to wheel around town on my own to shop for groceries, go out for a visit and of course for fundraising!”

Find out more about the Services that the Walk for Muscular Dystrophy helps make possible.

Day in the Life: Sparky the firedog at the HOP for Muscular Dystrophy

The HOP for Muscular Dystrophy is a national educational fundraising initiative that promotes compassion, caring and acceptance of differing abilities. The program provides an early introduction to inclusiveness and an understanding that physical differences do not change people on the inside to pre-school and elementary school-aged children.

HOP events occur in most Canada provinces around Easter time.  Each year, more than 10,000 children in Atlantic Canada “hop” to make a difference for families affected by a neuromuscular disorder.

Sparky the firedog loves to visit kids and thank them for supporting Muscular Dystrophy Canada; Fire Fighters have been Muscular Dystrophy Canada heroes since 1954.

Sydney Lewis, a 10 year old student in Grade 5 at Alderney Elementary School in Dartmouth, Nova Scotia is suiting up this year to put some “spark” into Sparky. Sydney loves her iPod Touch and Sim game, is a choco-holic and enjoys hanging out with friends. Sydney’s brother Kaleb is 12 is affected by Becker’s muscular dystrophy and her entire family volunteers with the Halifax Chapter of Muscular Dystrophy Canada.

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8:00 a.m.: Crawwwwwl out of bed; sure is chilly and dark out! Breakfast and be ready for pick up at 8:30 a.m.

9:00 a.m.: Arrive at Alderney Elementary School. Change quickly into Sparky gear including very large and heavy head and giant shoes! Do the “YMCA,” “the Chicken Dance” and the “Electric slide” with 100 elementary students.  Hugs and high fives to all of the hoppers who present Muscular Dystrophy Canada with a cheque for $1100! Now it’s time for a picture with the top fundraising student and school principal. The student is excited to know he’s won “Firefighter for A Day” and will get a ride to school in a fire truck next week.

11:45 a.m.: Arrive at Bedford South Elementary School — wow 460 excited students sure are noisy!!  I watch kids filing into the gym by class wearing their brightly colored and decorated bunny ears. Six year old Wesley Collins, who is affected by Duchenne muscular dystrophy, attends this school and is happy to see the entire school turns out to show their support! Watch quietly as the HOP for Muscular Dystrophy DVD is shown which teaches the students more about muscular dystrophy, caring and differing abilities. Then it’s time to hop, dance and MOVE our muscles! Join Bedford Volunteer Fire Fighters in thanking students and teachers for participating in the year’s HOP for Muscular Dystrophy and smile for the camera as CTV News films a HOP segment for Breakfast TV.

2:00 p.m.:  Arrive at Kids R Kids Daycare in Halifax- now these kids are little! Sparky and Muscular Dystrophy Canada staff visit each class and get lots and lots of hugs and high fives! The group listens to a story and then line up to receive a Muscular Dystrophy tattoo.

3:00 p.m.: We get to Voyageur Lakes Kids Academy, and these kids LOVE Sparky!  A few are a wee bit scared but Sparky waves and gets a smile and some hugs.

3:45 p.m.:  A quick stop at the Military and Family Resource Centre on the Halifax Naval Base and Sparky makes time for some healthy bunny snacks with the hoppers.  An obstacle course in their gym is a great way to move muscles, Sparky isn’t very fast but he makes it through.

4:30 p.m.: This is the end of Sparky’s day so it’s back to being Sydney.  After a dog day afternoon, Sydney is VERY tired and a little sweaty too! It’s worth it because the HOP campaign was an awesome day raising money and awareness for families affected by muscular dystrophy.

Day in the Life: Jason Davison, Sarnia Professional Firefighter and Rooftop Campout Participant

Jason Davison, Sarnia Professional Firefighters Association L492

Sarnia Professional Firefighters Association Rooftop Campout 

When Chris Ireland, our Muscular Dystrophy Canada Firefighter representative, approached us with the idea of the Rooftop Campout I knew that I wanted to be on that rooftop. It was something new and fresh that still incorporated filling the boot but with a twist and is for a great cause. As soon as Chris started looking for campers I e-mailed him immediately. Within a few days we had heard back that the following members would be camping on the roof: Kevin Leplante, Doug McCurdy, Brad Lumgair, Randy McDonald, Jim Rose and myself.

Over the next couple of months the campers were busy organizing what amenities, activities, living areas, and entertainment would be needed to get us through the three days that we would be spending on the roof. Meanwhile, Chris would be extremely busy organizing sponsors for the event, donation of meals for the campers, lining up members of the association to volunteer their time to collect donations, and promoting the event.

Saturday, December 1, 2012 was the day we were heading up to the roof.  Here’s how our first day went:

8:00 am: We start the day off with a great breakfast that was cooked by the firefighters. Our families, friends, members of local council, and the public also came to for breakfast. A wonderful little boy named William, who was wearing his full firefighting gear, is also here to enjoy breakfast. William suffers from muscular dystrophy and came to support our Rooftop Campout. He joined us for the opening ceremonies and many pictures.

10:00 am: With the Honour Guard at attention and a piper playing, we say goodbye to our families and head up the ladder truck to the rooftop where we will spend the next three days.

12:00 pm: All of our meals were donated by generous restaurants from around Sarnia. For lunch today, we ate chicken wings, hamburgers, wraps and fries from Norm’s Pub and Grill on London Road in Sarnia. We also had many generous people send up treats!

2:00 pm: We host a few visitors while on the roof like local radio stations and a photographer to capture us in action.

5:00 pm: Brownstones sent us a great snack to enjoy before playing some more of our rooftop games.  On the rooftop we have one tent for sleeping in and one tent that we use for our living area where we eat our meals and play poker, Atari and table top hockey.  Coffee Lodge sends us some hot drinks to try and keep warm during our first evening on the roof!

By the second day we were running out of things to do so we went to Facebook to ask for some ideas, some of which were knitting, dancing and push ups! We also had a football that we threw back and forth as well as just hanging out and telling stories. It turned out to be a pretty great campout, even in December.  While we were on the roof collecting donations in the boot and hauling it up, many other firefighters donated their time in the mall by collecting donations and talking to the public. In total we raised over $14,000 which was way over our goal. Thank you Sarnia!  The after party was held at Brownstones restaurant. They provided us with appetizers and a great environment to hold our party. We had many raffles and one lucky winner won a 55″ TV!  I had a great overall experience. I really enjoyed my time on the roof with my fellow firefighters, and connecting with the community that gave to such a great cause. If I have the opportunity I will be doing it again!

A rooftop campout is a fundraising event where Fire Fighters camp on the roof of a building and collect donations in support of Canadians affected by neuromuscular disorders.  Fire Fighter participants will endure below freezing temperatures, inclement weather, and whatever else nature throws their way during 3-day rooftop campouts to raise funds and awareness for muscular dystrophy.

You can donate to Rooftop Campouts by visiting the campout site during the event in person or by visiting each event’s online fundraising page.

Upcoming Rooftop Campouts will be held in: Edmonton (February 4-7); Spruce Grove (February 4-7); St. Albert (February 5-8); Strathcona (February); Leduc (February 4-7); Medicine Hat (February 22-24); Vernon (February 28-March 2); Penticton (February 28-March 3); London (February 28-March 3); Fort McMurray (April 4-7); Richmond Hill (March); Prince George (March) and Scugogg (May).  Visit our website and Facebook page for more details on these events or check your local newspapers and radio.

Day in the Life: Karen Dunbar, Services Specialist

Karen Dunbar is a Services Specialist for Muscular Dystrophy Canada in the Ontario and Nunavut region, one of a number of Services staff across the country.  Karen helps registered clients with systems navigation including assistance with paperwork and finding resources.  She offers her advice on many service related topics to help clients, and speaks at various functions to spread the word about Muscular Dystrophy Canada and the many programs available including Muscle Facts and Information Days.  Karen plans the Information Days throughout Ontario.  She secures local speakers to share their expertise on disability management, arranges for community groups to fill booths and share their knowledge for the day as well as personally reaches out to clients to let them know about the event.

Karen recently planned a Networking and Information Day in Sault Ste. Marie, Ontario along with two partners from March of Dimes Canada and Canadian Paraplegic Association Ontario.

Tuesday, October 30, 2012:

8:30 a.m.: After spending Monday travelling to Sault Ste. Marie and assembling gift bags for participants while arranging all last minute details, Karen spends Monday night at the venue hotel.  On Tuesday morning she heads to the conference room in the hotel to check the room’s arrangement, set up the registration table and gift bags, and organizing conference exhibitors.

10:00 a.m.: Muscular Dystrophy Canada’s Executive Director of Ontario, Stacey Lintern, welcomes the 60 delegates, which include individuals with neuromuscular disorders, individuals with disabilities, caregivers and health professionals.  Karen facilitates the day by introducing and thanking the speakers whose session topics include:

• Red Cross and Emergency Preparedness
• Vulnerable Persons Registry
• Self Advocacy
• Accessibility Legislation
• Community Health Living Project/Fitness for those with barriers
• Wounds: What Can We Do
• North East Community Care Access Centre
• Ontario Disability Employment Supports

11:00 a.m.: Karen presents on self-advocacy.  Her message includes:

• Individuals must know and understand their rights and responsibilities
• How to effectively and assertively advocate for your own needs.
• You know yourself best and it’s up to you to say what you want and need, and make sure you are heard!
• The solution may not be particularly quick or easy, but making the issue known is the first step toward resolution.

12:15 p.m.: Karen makes her way around the room to chat with those in attendance at lunch and on breaks.  She puts a face to a name for many of the people she talks with because she spent time personally calling clients in the area to invite them to the event.  When she chats with those individuals, she follows up with them on any issues previously discussed, like doctor referrals, paperwork advice or making a plan for future needs. The interaction and personal contact at Information sessions broaden the discussion moving forward.

3:30 p.m.: Once all speakers have presented for the day, Karen is available to delegates who have ideas or questions that have come up throughout the day.  Karen helps with clean up, thanks booth exhibitors, and review event evaluations.  Karen will take suggestions and feedback from the evaluation to plan and improve and the next event.

The Information and Networking Day was a success! All the hard work paid off, and Karen is pleased to assist and connect with a new group of individuals in Sault Ste. Marie.  Karen returned to her hotel room to check on email and voicemail, many from clients from across the province who can use her assistance.  Early the next morning, Karen will travel back to the Toronto area and continue her daily tasks of assisting clients with Services.

A Day in the Life: Luca “Lazylegz” Patuelli

28 year-old Luca “Lazylegz” Patuelli, professional B-Boy (Breakdancer) and motivational speaker lets us in on his life for a day.  Read ahead as the national ambassador for Muscular Dystrophy Canada shares a backstage pass to one of his jam-packed days at this year’s Youth in Action Conference in Calgary, AB.

 Saturday, August 26, 2012:

8:00am – Live interview on Global TV – Luca wakes up at 6:00 am to join Marla Spiegel (National Director, Research, Programs & Services) and head to the studio for the interview where they promote YIA12 and Luca’s inspiring message of  “No excuses, no limits.”

8:30-9:30am – In the taxi back to the hotel, Luca catches up on social media and tweets about the interview.  After a quick change of clothes, he meets up with several MDC youth delegates and their families for breakfast at the hotel.  Luca attends the Activism seminar at YIA12 presented by Danielle Peers, Ian Gordon and Lindsay Eales.  This informative and funny presentation works on recognizing, resisting, re-imagining and remaking the role of disability on a local scale and across Canada.

1:00pm – Periodical rest is important when you have Arthrogryposis like Luca or muscular dystrophy like many YIA participants, so after a short rest Luca heads to downtown Calgary to visit the Eau Claire Plaza for Pulse Studio’s HipHop All Style Dance Competition where he dances with local Calgary dancers.

3:30pm – Another taxi ride – and lunch en route – heading back to the hotel.  Luca participates in the discussion during the Sexuality and Healthy Relationships education session alongside Heather Cobb and Stephanie Lebrun. This session helps the youth discuss some of the myths, stereotypes and realities of healthy relationships and sexuality.  Luca helps participants reflect while sharing some of his personal experiences.

7:30-8:30pm – Luca attends the gala dinner after finishing sound check, setting up a merchandise booth, and resting and stretching in preparation for his performance.  Then Luca’s motivational entertainment performance for the 62 youth in attendance begins and the party starts!

9:30pm –Dance party with the rest of the Muscular Dystrophy Canada youth and adults is in full swing.  Luca shows off some of his skills as well as teaches some of the youth new dance moves and the youth show off what they already know.  Luca and his fiancée Melissa love hanging out with the YIA12 participants and see them bust a move!

11:30pm – Off to Bed!

Luca is always on the go; he travels a lot for his dance and motivational speaking schedule and loves to meet new people while spreading his message of “No excuses, no limits.”  Muscular Dystrophy Canada was extremely lucky to have Luca share his dance moves and positive attitude with everyone at YIA12!

Luca’s busy schedule continues into the fall as Luca and Melissa get ready for their dance program in Laval (Projet R.A.D) and Luca prepares for ILL-Abilities five-year anniversary festival October 19-21 in Montreal. Check the ILL-Abilities website for more details on both.

Day in the Life: Volunteer & Award Winner Kalliana King

At 11 years old, Kalliana King, a Muscular Dystrophy Canada volunteer, is the youngest to receive a 2012 Governor General’s Caring Canadian award during a ceremony at Rideau Hall in Ottawa on April 17, 2012.  When Kalliana was eight years old she made a goal to raise $500 for Muscular Dystrophy Canada in honour of her friend, Adam Sohye, by dyeing her hair pink and then promising to shave her hair off if she made her goal.  Kalli’s dedication and spirit inspired the community, and she ended up raising over $14,000!  Read ahead for a behind the scenes look at Kalli’s experience as one of only 28 volunteers to receive the award.

April 17, 2012:

10:00 a.m.: Kalli and her mom gather with her fellow award winners at their hotel to board a bus headed to Rideau Hall.  Kalli was the youngest winner in 2012, and she met many nice people from acrossCanada on this journey.

11:00 a.m.: After arriving at Rideau Hall, Kalli hung out with her parents before being ushered into a waiting room where she and the other award winners were given instructions on how to receive their awards.  One older lady in particular took an interest in Kalli & said she’d look after her if Kalli was feeling nervous.  Kalli told this kind lady she wasn’t nervous and asked the lady if she was nervous.  After a short conversation Kalli told the lady not to worry, and to just be herself.  The lady then burst into tears at the display of confidence Kalli showed at such a young age. After the directions were given and quickly practiced, the orchestra started to play and Kalli headed into the ceremony room.

11:30 a.m.: Kalliana was a mix of emotions—feeling both nervous and really excited—as she waited to be announced.  When Kalli’s name was called, she stood and walked toward Governor General David Johnston and his wife then Kalli stood to his right side and was handed her award.  Kalli and Governor General Johnston were meant to shake hands to end the exchange, but he ended by giving her a big old hug instead.

12:30 p.m.: Following the ceremony, Kalliana taped a video interview and posed for a group photo with her fellow award winners before enjoying a reception with lots of delicious goodies.  Kalli and her family also went on a tour of Rideau Hall, which included stops that are usually restricted to visitors.  Kalli was able to visit the ground’s greenhouse and most of the rooms inside.

2:30 p.m.: After the excitement of the ceremony, the real fun began.  Kalli got to change out of her ceremony dress, which sounded like a big relief for her.  The Kings met up with Kalli’s cousin and headed to Ottawa’s Byward Market to eat at Hard Rock Café and enjoy homemade ice cream fromSugarMountain.  Kalli’s family then headed for an afternoon tour of Ottawa including pubs, which Kalli doesn’t get a chance to do at home inCowichan Bay, BC.

The fun continued after award day as Kalli was in Ottawa for five days, her first time in our nation’s capital, and got to explore some of the museums, including the War Museum (which was special to her as her dad is in the Navy) and the Museum of Nature.  The biggest surprise came when Kalli, her mom, dad and brother, were arriving to the airport at home close to midnight. Kalli’s grandpa was expected there to pick them up, but Adam Sohye and his whole family had also come to welcome Kalli home and  show her how proud they are of her accomplishments.  Kalli and her family are dedicated participants of the Mesachie Lake Group Baseball Tournament every year, which supports Muscular Dystrophy Canada, and she creates a new idea of something to sell every year in order to continue raising funds for the cause she cares deeply about.

Day in the Life: Lana (National employee)

Lana Milley is the Web Communications Assistant in the National office of Muscular Dystrophy Canada.  Lana moved from her native Russia four years ago.  In Russia, Lana earned a university degree in cultural studies and took courses in graphic design, which allowed her to work from home for several large companies and an accessibility non-profit.  Lana has Limb Girdle Muscular Dystrophy. She uses a wheelchair, and finds Canada to be much more accessible than Russia.  Lana became a member of the Toronto Chapter when she arrived from Russia, which is where she connected with staff at the National office and began volunteering.  The volunteer position became a part-time job that keeps Lana extremely busy.

Tuesday, March 20, 2012:

8:30 a.m.

Lana is ready to go to the Muscular Dystrophy Canada office after getting a little help from an attendant to prepare for the day.  Lana takes WheelTrans to work, so she waits for the vehicle to arrive. WheelTrans must be booked 24 hours in advance and the ride can be longer on the days when other WheelTrans users are picked up along the way.  Lana is very glad to work for Muscular Dystrophy Canada because she enjoys web design and interactivity.  Getting the job was a great opportunity for her as she didn’t have any work experience in Canada.  Lana also enjoys working for the organization because it offers an accessible workspace and flexible hours, although she is kept incredibly busy during her work hours!

10:30 a.m.

After arriving to work, Lana goes to the weekly Marketing meeting, where the five team members discuss what projects are being worked on and she updates the team members through discussions about new ideas or campaigns.  Lana keeps the team updated about what she is working on that week.  Lana has great ideas for design and promotions, and is an incredibly important member of the team by sharing her perspective as an individual affected by muscular dystrophy.  Her opinions are invaluable in the development of marketing and communications concepts.

1:00 p.m.

Lana keeps busy during her 10 a.m. to 4 p.m. work day by making all updates on the organization’s website, working with TYPO3 and Adobe Creative Suite, and designing the e-blast and format of move it!, the digital newsletter.  Sometimes Lana feels pressure from the language barrier, as she has only been speaking English for four years, but her verbal and written skills are incredibly advanced for a language that is still very new to her.  Lana consults with the IT manager, Errol, while addressing technical issues and creating new webpages.

4:00 p.m.

Lana finishes up for the day, and sets an email reminder for staff that she will return to the office on Thursday to continue working on her many projects.  She waits in the lobby until WheelTrans can pick her up to go home, which will be between 4:15 and 4:45 p.m.  Lana enjoys using her knowledge of  HTML and CSS codes for websites, graphic design and working on promotions at Muscular Dystrophy Canada, especially since she is assisting with supporting individuals and families with neuromuscular disorders.