I’ve created this page because I have an 8 year old daughter, Hayden Grace, with Angelman syndrome (AS). After her diagnosis, I learned about the work of FAST (Foundation for Angelman Syndrome Therapeutics) and the group of parents who give of their time- their blood, sweat and tears- without being paid one dime to help push research forward towards curing AS. I wanted to get involved, do as much as a could because I too wanted to live with the hope that our children could have a bright future... thus, the formation of Team Miles for Smiles in 2011. Over the past 6 years, our over 150 teammates from around the US, Canada, Australia and the world have crossed finish lines of races ranging from a 5K to the Ironman and raised over $150,000 in the process for FAST. Because of recent advancements in the understanding of AS, treatments for this disorder are not only possible, they are probable.
Individuals with AS typically have balance issues, motor impairment and debilitating seizures. Some patients never walk. Most do not speak. Despite its often devastating effects, Angelman syndrome is a simple disorder involving only one gene. FAST scientists have already cured AS in the lab using several different approaches. FAST is committed to bringing life-changing treatments for Angelman syndrome to clinical trial within two years – but we need your help.
FAST has brought together a multi-disciplined team of more than two-dozen scientists from multiple universities and pharmaceutical companies to join forces on a focused path to a cure. Their work will change life for people with Angelman syndrome and, potentially, related disorders like autism and Alzheimer’s disease. FAST is the largest non-governmental funder of Angelman syndrome research and the only organization with a detailed plan towards a cure. FAST has set a $2 million community goal for this year. If we can meet this $2 million goal, we have an excellent chance of getting those funds matched -- and the faster we will be able to start clinical trials. Every dollar counts!
People ask me what big race goal I have this year that I am hoping to raise money on behalf of. I do have a couple of exciting races, including racing for Team USA at the ITU Cross (off-road) World Championships in Penticton, Canada this coming August, which I am so excited and honored to be a part of, but my true passion is to help others set their own goals and reach their personal finish lines. Raising money and awareness for FAST is part of that goal. After all, the more people who know about FAST, the greater FAST’s impact, so please spread the word by sharing my page with your friends and family. Thank you in advance for your generosity, it means a lot!
To learn more about Team Miles for Smiles, to become involved and set a race as a fundraising goal for this amazing organization, or to be partnered with an Angel and their family as part of our Wings to Fly partnership, please visit the Miles for Smiles website at http://www.miles-for-smiles.org/. And if you are looking for a little inspiration to help you start, watch this video of our team highlights for 2016 and the Angels who are cheering them on every step of the way. Thank you and God bless you all.