Welcome to My Personal Page
August 5, 2016
Dear Friends and Family,
As many of you are aware, today is Owen’s birthday. While it was one of the happiest days of our life at the time, today is bitter sweet. While we are reminded that he is no longer with us, we are also reminded of the impact he had on our lives. He made us better parents, better partners and better people. Owen had a wide smile and a big personality. He was a sweet guy. He would have been 12 years old today – entering his thirteenth year. In Owen’s memory – we are going to embark on a minor challenge. We are going to run 13.1 miles and raise money for SMA research. We would like you to help us with this challenge.
Please join Tom and I and support Cure SMA by making a contribution to our personal fundraising page for the 2016 Rock and Roll Philly Half Marathon. We are supporting Cure SMA because spinal muscular atrophy is the number one genetic cause of death for infants, and approximately 1 in every 50 individuals is a genetic carrier for SMA. But there’s great reason for hope. We know what causes SMA and what we need to do to develop effective treatments. We’re getting closer and closer to an FDA-approved therapy, with 17 ongoing drug programs—and six of those are now in clinical trials.
We've chosen Cure SMA because they are uniquely positioned to direct funds to where they can make the greatest difference as quickly as possible. They’ve already invested $57 million in research. They also provide vital support for families living with SMA, improving their quality of life today. And every year they host the largest SMA conference in the world, bringing families together with the leading SMA researchers.
Making a donation to Cure SMA is easy, secure and completely confidential. Just click on the link and follow the steps!
Thank you again for your personal gift to support our efforts to fund vital research and family support programs for those affected by SMA.
Wish us luck!
Amy and Tom