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Tuesday, November 16, 2010

Walk N Roll 2010, Baby!

This Sunday will be our second year raising money for the Families of SMA Arizona Walk N Roll. FSMA serves as a critical support system for families facing the devastating diagnosis of Spinal Muscular Atrophy--they fund critical research for treatment and cure for this type of muscular dystrophy, which affects newborn babies the hardest. Half of babies born with this incurable muscular disorder die before age 2.

When strangers strike up a conversation with me about the kids and their disease comes up, they usually ask me if they can walk--they are in wheelchairs, so while I think the answer would be obvious I still find the patience to explain that not only can they not walk, but they don't have the muscle strength to sit up, roll over, lift their arms to comb their hair, or cough. What they lack in physical strength they make up for in charm and intelligence, but the fact remains that they will live their lives dependent on wheelchairs and caregivers and that just sucks.

Families of SMA was a key resource for us when the twins were first diagnosed with this terminal disease at age 16 months. FSMA sends "newly diagnosed" care packages to new families, put us in touch with other local families on whom we can rely for support, host a message board forum so that families can organize ourselves network and rely on our worldwide counterparts for support, directly fund cure-based and treatment-focused research, and compile summaries of laboratory and clinical research in layman's terms for the families.

FSMA is the very definition of "a good cause" and if you have a few bucks to throw to it, I'll take them. If you do or don't, the fact that you're just aware of the disease that defines us now is a win, as far as I'm concerned. Thanks for all your support over the last two years--I feel like a broken record saying that all the time, but it's true. Managing this stressful life in a vacuum, with nobody to listen to me or hug me or bring me bottles of wine, would blow chunks.

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