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. 

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Fifteen Years of Volunteering: Profile on George Brinton

George in the officeGeorge Brinton is one dedicated, self-less individual. He has been volunteering with Muscular Dystrophy Canada for over 15 years in our Vancouver office. Over those 15 years, George has certainly seen a lot of changes and growth within the organization, but his reason for volunteering remains the same – help in anyway he can to help find a cure for muscular dystrophy.

“Just because you have a disability, doesn’t mean you can’t contribute to society. If everybody did a little bit to help, it would make a big difference.”

Back in the late 1990s, George decided to be more involved in the organization as he himself has FSH Muscular Dystrophy. George helps out around the Vancouver office with preparing materials for events and  stuffing envelopes among other things. At conferences and regional Walk for Muscular Dystrophy events he helps with registration, provides inspiration… you can always spot George with his Canadian flag flowing behind him off his wheelchair.

Alyssa Goad who works in our Vancouver office says, “George volunteers in our office twice a week, every week!  We honestly could not do it without George’s help, he does all our mailings, data base clean up and brightens up our office with his smile.  Volunteers are integral to all organizations big or small, we can not thank volunteers enough for everything they do!”

Jubilee medal

Last year something very special happened. George was recognized for his many years of volunteer service for Muscular Dystrophy Canada by being awarded a Queen’s Diamond Jubilee Medal. Receiving his medal amongst the Fire Fighters and Muscular Dystrophy Canada staff has been his favourite moment during his 15 years with us.

In addition to his great work with Muscular Dystrophy Canada, George also lends his time to the Salvation Army during the holiday season so that he can help even more people. When asked what he would tell others who are thinking of volunteering George responded,

“Do it and you will enjoy it. The best thing that could ever happen to me is to volunteer.”

Thank you George, and to all our wonderful volunteers who have given so much of their time over the years!

Team Maliyah – Vancouver Safeway Walk for Muscular Dystrophy

Vancouver Walk 2012-Team MaliyahMaliyah Chung was only 14 months old when she was diagnosed with Spinal Muscular Atrophy Type 2. A bright, determined young girl, Maliyah uses a wheelchair because of her condition and progressive weakness. But getting around in a 300+ pound wheelchair isn’t easy for Maliyah, especially at home where stairs, corners, doormats, and even the bathrooms, are obstacles. Thanks to Canada Safeway, Maliyah now has the freedom to access every area of her home. The Chung Family received a generous donation through the Safeway Mobility Grant,  allowing them to make essential home renovations to enhance Maliyah’s quality of life.  Today, Maliyah can travel all over her house.

As her parents, Joel and Farah tell us, “With all of the challenges she has and will continue to face, the thought of Maliyah being confident, as independent as she can, and free in her own home brings happiness to us.”

MaliyahThe Chung Family participated in this year’s Safeway Walk for Muscular Dystrophy in Vancouver, BC. Donned in their own team t-shirts , Team Maliyah arrived at our Jericho Beach Walk with an amazing 70 people along with them! They won the Largest Team Award and raised $3,120 for Muscular Dystrophy Canada this year! Thank you to the Chung Family for bringing their spirited family and friends to the Safeway Walk for Muscular Dystophy and for helping us help others affected by neuromuscular disorders!

Support the Chung Family by voting for the family to win a grant with the Aviva Community Fund for an inclusive wheelchair playground in Port Coquitlam, BC. Vote today and tomorrow! The polls close December 12th.