SUDEP took my sister Kim, suddenly at the age of 24. It was the shock of a lifetime that left a deep hole in our family. For years following our loss I had cringed at the mere word ‘epilepsy’ and had essentially tried to block it out. Eventually however I came to realize that I must face it, and that the best way would be head-on, through personally supporting the cause in working toward a cure. I didn’t know how best to proceed with the idea of doing something substantial until:
A meeting with Gary Collins and his excellent team at Epilepsy Canada then sealed the deal as it was clear that their expertise and experience (and immediate willingness to jump aboard) could play an instrumental role in making this the large and fruitful project that I had envisioned. I am so grateful for the support of our friends in this important effort!
Earlier this year, I shared my idea of climbing Mt. Kilimanjaro with my close colleague and friend, Leonard Allen, to fund raise for diabetes. I watched helplessly over the last 5 years as it ravished my Mom’s health.
That’s when Leonard told me about the tragedy that befell his sister Kim, and that he shared the same idea – to climb Mt. Kilimanjaro and raise funds to help find a cure for epilepsy in memory of his sister. Kim lost her battle to epilepsy on June 24, 1991 at the young age of 24. I have never seen Leonard as emotional as he was talking about his younger sister and how unaware people in Kim’s life were of this terrible disease. Later that evening, sharing my decision to climb Mt. Kilimanjaro with my parents, I was surprised to hear about our relatives who also had suffered and died from this disease.
Quickly after our conversation, Leonard reached out to Epilepsy Canada and introduced me to Gary Collins. After listening to Gary’s story of suffering with epilepsy himself over the last 30 years and its impact on his life, I was further inspired to throw my full support behind Leonard and Gary to bring awareness to epilepsy. In this modern era, I am astounded by the lack of awareness and education of this disease.
In 1985, my life changed when I was suddenly diagnosed with epilepsy.
It was then that I discovered that I was DIFFERENT in a very profound way. I was afraid. I was afraid that people would treat me differently. In addition to being afraid, I was annoyed. I was annoyed because no one could tell me WHY I had this disorder. No one could tell me how I could cure it. No one fully explained the consequences or side effects of taking a severe medication. No one told me, until 2010, that I could die from epilepsy. It wasn’t until 2010 that the medical community finally began to come clean about SUDEP.
In 2010, I also learned that I’m very fortunate. I’m lucky, statistically. I joined the Board of Directors of Epilepsy Canada and learned that my story was everyone’s story. People with epilepsy often suffer in silence. By now, you’ve read some of the startling facts.
I’m excited to be part of Leonard’s team! Although I’m setting out on the journey to help me conquer my own fears, I’m climbing for the 360,000 Canadians, like me, who live with epilepsy. In fact, I’d like to take you along on my back. We’re taking a banner with us as we climb Mt. Kilimanjaro. We’ll have the Kim’s Climb logo on it and our Canadian flag. ADDITIONALLY, if you donate $100 and send me your electronic signature, we’ll put that on the banner as well! I hope that I can take as many of you as I can up that mountain. Doing that you will be my pleasure and inspiration. I hope you can come along for the ride!!!!
Send your signature to firstname.lastname@example.org
*Editor's Note: Gary's full participation in the climb is subject to the approval of his doctors. His determination to date, has enabled him to overcome many obstacles in life. But he has agreed to govern his actions by their decision on this one. We shall keep you posted.
My name is Lon Vining and I am 65 years young!
When I met Gary almost 30 years ago, we worked together at a software company. I always knew that Gary loved hockey and once played at an elite level. Gary also loves to play golf. Over the years we have always stayed in touch. At lunch gatherings when others would have a drink, Gary always had a virgin Caesar. I never thought anything of it.
A few years ago Gary asked if I would become treasurer of Epilepsy Canada (“EC”). I was delighted he asked but was curious as to how he became involved. To my absolute surprise he told me that he developed epilepsy in his 20’s, probably as a result of too many concussions while playing hockey. I was stunned. He said he had kept his condition a secret for many, many years.
For too long, people with this disease have felt that they had to keep it a secret. As I became more involved with EC, I also learned about SUDEP – an unknown killer and something everyone with epilepsy must consider.
When Leonard approached EC this year with a unique funding-raising initiative in memory of his sister I was immediately in. I enjoy a challenge and pushing myself and the opportunity to climb Kilimanjaro is a once in a lifetime adventure. More importantly, the opportunity to raise funds for research to cure epilepsy is what drives me. Epilepsy must not remain in the shadows, it must not be kept as a secret. I hope that you will join me by contributing to help fund the research for a cure.
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