18th Annual New England Walk-n-Roll
Wompatuck State Park
Please join us to support Cure SMA by making a contribution to Team Addison Barrett.
We are pleased to report that our fundraising efforts over the years have really made a difference. In 2016, the FDA approved the first ever medication to treat Spinal Muscular Atrophy. It is called Spinraza. The medication is injected intrathecally (ie. into the spinal column via a lumbar puncture). Many SMA children have received this treatment and have had increased muscle movement and strength. However this is still not considered a CURE. A novel gene therapy is being studied, which shows even more promise, but not every child with SMA is being offered this treatment. A LOT lot of work still needs to be done, and for this we ask for your support!
As many of you know, our first child, Addison, was born with Spinal Muscular Atrophy Type 1 (SMA-1). She was perfectly healthy at birth and then quickly declined, being unable to roll, sit, crawl, eat, or breath on her own. She was diagnosed when she was 6 weeks old and Greg and I then found out that we were both genetic carriers of SMA. She required a feeding tube by 8 weeks old and required breathing assistance by 6 months old. Despite her lack of muscle strength, she had a sense of humor, personality and lots of smiles. She was loved and spoiled--going on daily walks, smelling flowers, painting, "swimming" in the therapy pool, and reading books. Her medical care was overwhelming, but it was made do-able with the help of her wonderful doctors, home nurses and our family. She got to meet her little brother Ryan. She died shortly after at the age of 19 months old. We participate in this walk yearly to raise money for a cure!
Suprisingly 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.
Thank you for supporting our cause in memory of our sweet Addie.
Kim, Greg, Ryan and Kaelyn
Love, Kim, Greg, Ryan and Kaelyn