Welcome to My Personal Page, supporting Melia!
Raising money to find a cure for Melia - at Cure SMA’s 16th Annual Walk-n-Roll in Kennedy Grove Park in El Sobrante on Saturday, August 25th.
My (soon to be official niece) Melia was diagnosed with Spinal Muscular Atrophy (SMA) in December of 2016. SMA is a neuromuscular disease affecting voluntary muscle movement, slowly diminishing one’s ability to move, eat, and breathe. SMA 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.
Now, with an FDA-approved treatment (Spinraza) and 19 ongoing drug programs - five now in clinical trial - we are closer than ever before to a cure for SMA. Melia has been receiving Spinraza for over a year now and the progress has been amazing. I am impressed with her increased muscle strength. We are so grateful!
I’ve chosen to support 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. Melia and her family just got back from their first conference in Dallas and it was an incredible experience for the entire family.
Thank you again for your support. Not only will your participation fund vital research and family support, it will also provide hope to the entire SMA community.
If you can walk with us, we're excited and can't wait to see you - and the details are below. If you can't walk with us, we hope you'll consider donating to help find a cure.
Here are the details for the walk:
- Date: Saturday, August 25
- Time: 10:00 am - 1:00 pm
- Location: Kennedy Grove Regional Recreation Area / 6531 San Pablo Dam Road, El Sobrante, CA 94083
- Registration Fees: Adults $25, Child 12 & Under $10 (fee includes T-shirt, snack and lunch).
- More information visit : www.smanorcal.org