SMA – Latest News from MediaStorm

Support Philly: Friends of Philly 7th Annual Golf Outing

Post author:Cortney Cleveland
Post published:August 23, 2013

Philly Mayer’s story made A Thousand More one of our most powerful workshop projects to date. The short film documents his family’s determination to give their son a whole and vital life after Philly was diagnosed with Spinal Muscular Atrophy, a genetic disease that leaves the spine underdeveloped.

Philly is still going strong and you can join in his fight against Spinal Muscular Atrophy, a disease occuring in an estimated 1 out of every 6,000 births. The Friends of Philly 7th Annual Golf Outing supports the Philly Fund’s commitment to lifting some of the financial and emotional burdens on families who care for these special children.

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Sixth Annual ‘Friends of Philly’ Golf Outing

Post author:Lisa Jamhoury
Post published:July 17, 2012

Friends of Philly is holding its Annual Golf Outing on Saturday, September 8 in Rockaway, New York. Come to golf, or if you're not a golfer, attend the luncheon or sponsor a hole. Friends of Philly Fund is a charitable organization committed to lifting some of the financial and emotional burdens on families who care for children suffering from Spinal Muscular Atrophy (SMA), a genetic motor neuron disease that affects about one in 6,000 babies. Your care and support gives strength to these special children and their families. Join Philly Mayer in his fight against Spinal Muscular Atrophy. See details about the event below. MediaStorm produced a story about Philly and his family, A Thousand More, in the MediaStorm Storytelling Workshop. A family is determined to give their disabled son a whole and vital life. In the midst of a great burden, one small child – with a seemingly endless supply of…