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Welcome to our Walk-N-Roll home page!
On August 6 we will be traveling to Beaver Island State Park, just outside of Buffalo, to participate in a Walk-N-Roll event to benefit Families of Spinal Muscular Atrophy (FSMA). We'd love to have you walk with us as part of Team Oscar-Go! If you're not able to join us, please consider making a donation to our personal fundraising page.
Most of you know that Oscar was diagnosed with Spinal Muscular Atrophy, type 2, at age 14 months. SMA is a genetic disease which affects voluntary movement. Oscar was never able to crawl and he will never walk. As his body grows, he will become weaker. Cognitively, he's firing full-speed ahead, though! At two and a half, he starts many sentences with "Actually" and asks "Why?" all the time. He has a great sense of humor and he's a great negotiator.
From our first contact with FSMA, just days after Oscar was diagnosed, the organization has been there for us. Everything from phone calls to emails, care packages to the incredible annual FSMA conference. As an international organization, FSMA has created a remarkable network of families who support one another and an inspiring network of the top researchers in the field.
SMA is a rare disease with a broad range of severity. One in every 6,000 babies is diagnosed with SMA, more than half of which are type 1 babies who often do not survive past their 2nd birthday. However, this is a disease for which there is some hope. There has been groundbreaking research for SMA. The researchers know a lot about how SMA works and are actively working on developing treatment, and maybe someday even a cure. Families who live with SMA turn to Families of Spinal Muscular Atrophy for information, guidance, encouragement and most importantly HOPE.
Making a donation to Families of SMA is easy, secure and completely confidential. Just click on the link and follow the steps!
Thank you for joining us in our quest to support Families of SMA. Your tax-deductible gift will bring us one step closer to creating a world where Spinal Muscular Atrophy is treatable and curable.
Best,
Sally, David, and Oscar www.oscar-go.org
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