LA JOLLA, Calif. - Aug. 18, 2016 - PRLog -- Ricochet will be surfing with several kids who have SMA, including 4-year-old Miles McIntosh who was diagnosed at the age of 18 months.
When Miles was asked how he felt about surfing with Ricochet, he said, "I'm scared because I don't know how to surf. I hope Ricochet can help me." And help him, she will.
Miles was diagnosed with SMA Type II at the age of 18 months. The diagnosis came with words no parent ever wants to hear ... "No treatment, no cure."
SMA is a disease that robs individuals of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to stand, sit, crawl, walk, swallow food effectively, or breathe. It is the number one genetic cause of death for infants.
Miles' parents were told all the things their child would not be able to do, and that he would only grow weaker over time. But Miles has a fighting spirit and zest for life. He'll be demonstrating what he's ABLE to do when he's on a surfboard with Ricochet!
About a year after his diagnosis, Miles was enrolled in a clinical trial taking place at UCLA. Ionis Pharmaceuticals and Biogen, Inc are developing Nusinersen under a broad Phase 3 development program for the treatment of infants and children with SMA. Nusinersen is an investigational, potentially disease-modifying therapy for the treatment of SMA. Nusinersen offers hope to the SMA community as the first drug that has demonstrated clinical benefit in a controlled study in patients with infantile-onset SMA.
In addition to providing a once in a lifetime surfing experience for these children, the goal is to raise awareness of this devastating disease through the efforts of Cure SMA, an organization that leads the way to a world without spinal muscular atrophy.
Please join Ricochet and Cure SMA as they surf to wipe out SMA. Paw-abunga! See you there.
Contact
Megan Lenz
***@curesma.org
Photos: (Click photo to enlarge)
Read Full Story - Surf Dog Ricochet to Surf with Kids Who Have Debilitating Illness That is Robbing Them of Their Ability to Walk, Eat, or Breathe | More news from this source
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