2018 Zane's Run
Great Valley Middle School
Welcome to Team Trisomy 18 Fundraising Page
Ten years ago my daughter Alyssa was born with Trisomy 18, a rare chromosomal anomaly. My husband and I were told that Alyssa wouldn't survive and we would be "lucky" if she were to live a week. Alyssa survived that week, and now she is an active thriving little girl with special needs. The year Alyssa was born, another nearby family welcomed twin lttle girls. Sadly one of those little girls was diagnosed with SMA and her life journey ended after six short months. Zane was the little girl and the namesake for Zane's Run. Alyssa, my son, and I will be running in the 10th annual Zane's Run. Would you please support us and Cure SMA by making a contribution to my personal fundraising page (Team Trisomy 18).
There is no cure for Trisomy 18 but a cure for SMA is possible. I’m 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. There’s great reason for hope. We know what causes SMA and what we need to do to develop more effective treatments. We’re on the verge of further breakthroughs, with 19 ongoing drug programs—and five of those are now in clinical trials.
I’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 $70 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 my efforts to fund vital research and family support programs for those affected by SMA.