Our SMA story
Please join me and support Cure SMA by making a contribution to my personal fundraising page for the 2016 Rock ‘n’ Roll Denver Marathon & Half Marathon.
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. 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.
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 $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 my efforts to fund vital research and family support programs for those affected by SMA.
Jackson is a vivacious 5 year old boy who was diagnosed with spinal muscular atrophy (type 3) three years ago. He had previously been hitting all of his milestones on time and with ease until he was 18 months old. He regularly complained of pain in his feet, he fell down frequently, and was unable to bend down to pick up toys. He started losing weight because he would sleep around 16 hours a day. At the age of two I found out his symptoms were the result of SMA. His little body was working so hard to breathe and play, that he was constantly fatigued. He may one day lose the ability to walk entirely, but right now his power chair helps him keep up with his friends and he's a very active kindergartner!
Thankfully, we received medical interventions and therapies in an effort to sustain his energy, and teach him independence in the face of his muscle disease.
Finding myself lost in the midst of a daunting world, my coping mechanisms were struggling. When I needed help, CureSMA became a leading support for my family. Now, I look to this organization for my strength, and I am determined to provide strength for other families through fundraising. Now I can feel like I'm fighting for Jackson and all of our SMA loved ones. Together we can and we will cure SMA.