Tribute to Champions of Hope Gala
Sep 28th 2015
On September 26th, I was given the honour of speaking at the Tribute to Champions of Hope Gala presented by Global Genes. Global Genes is a leading advocate of rare diseases with global reach to the worldwide community of patients with rare diseases. Cystic Fibrosis and Cerebral Palsy are two of these rare diseases - there are so many. But what struck me at this gala was that the room was filled with hope. This was a room filled with love and hope. There was no sadness - just awesomeness!!
The evening began with a walk along the Blue Carpet and then a cocktail party where I got to meet so many interesting people. Andra Stratton was diagnosed with Familial Partial Lipodystrophy at 37 years of age after spending most of her life sick, tired, hungry and in pain. What doctors discovered was that she doesn't store fat which means that she doesn't have any stored energy which leads to an insatiable appetite. But a plate of food could skyrocket her triglycerides and lead to an untimely death. This disease is progressive and effects Andra's organs. And her muscular upper body and thick neck and face garners constant staring in public. Now, she is the President of an advocacy foundation for this disease. There is no cure. She is just one story!
Bonner Paddock has Cerebral Palsy. He didn't get diagnosed until he was 29 years old. He was always a bit clumsy walking and his balance was off but he never wanted anyone to notice so he hid it well. After a friend's child died of CP, Bonner became an advocate for special needs children. He went on to climb Mt. Kilimanjaro and completed the IRONMAN World Championships in Hawaii - both incredible considering how much balance it takes to climb a mountain and ride a bike! Bonner was awarded with the Brave Feats of Courage Award along with Courtnay Midkiff (he walked across the USA and he has Fabrys Disease), Noah Coughlin (he has run across the USA 3 times and he dedicates each day to a different family and disease) and Jonathan Maidment (he walked the Appalachian Trail and has Alpha -1 disease). I had the honour of presenting these awards to these fine gentlemen.
Then there is Madi Vanstone. Madi is from Ontario and she has Cystic Fibrosis like me! What a thrill for me to meet this intelligent advocate for CF. She single handedly got the government of Ontario to approve funding for the drug Kalydeco. This new drug for certain forms of CF - a miracle drug - was made available at $348,000 per year. The price makes this CF solution impossible so Madi started campaigning for this drug to be funded in Ontario. Her first letter to the Health Minister was ignored. The she started to collect signatures and gained a lot of media attention which then forced the Premiere to meet with Madi. And that meeting led to Kalydeco being funded in Ontario. Madi was awarded with the Rare Champion of Hope International Teen Advocacy Award!
It truly was a night of hope. I have always told my story as one of thankfulness for the gift of sport and the gift of CF. I would not have had the fulfilling career that I had without CF. Yes, I raced sick. Yes, I raced on antibiotics. But my mission statement was to do the best that I could do with my deck of cards and if those cards involved antibiotics and a chest infection, then those would be my cards. I shared my story of meeting Tracy Richardson - mother of two kids with CF - and how she raced to raise funds so that kids with CF could have access to sport. And then how we both raced the IRONMAN World Championships to raise awareness for CF in 2004. I was in the shape of my life and then got a chest infection 5 days before race day. But my mantra was to be the best person with CF and with a chest infection on that start line. I never coughed the whole day. I don't remember it being hot or windy. I was so happy to get to race that I just loved every minute of it. I finished 4th that year in spite of being on strong antibiotics (Ciprofloxcin) and being sick. It was truly one of the best races of my career on so many levels. The power of the mind is an incredible thing and HOPE keeps us all alive and fighting.
This Tribute to Champions of Hope was inspiring and it has left me more empowered than ever to do the best I can do with my deck of cards and to help others do the same.
Alton Public School, Austin, Austintriathlon, Australia, Caledon, Clermont, Connecticut, Cycstic Fibrosis Association, Edmonton, Florida, Germany, Hawaii, Interview, Ironman, Ironman Jackets, Kona, Muskoka, New Orleans, New York, nutrition, Ontario, Penticton, Philippines, PowerBar, Pucon, Rev3Tri, Rhode Island, St. Croix, Story, Toronto Blue Jays, Training, Triathlon, TriMax Fitness, Viterra, Xtri,