March 16, 2004 > Second annual Spotlight on SMA
Second annual Spotlight on SMASaturday, April 24, 2004
Theater Party with Silent Auction To raise awareness of Spinal Muscular Atrophy and funds for research On behalf of some 80 families in the San Francisco Bay Area touched by SMA 2 p.m. "My Antonia," presented by TheatreWorks Mountain View Center for Performing Arts Free parking available under the theater or in nearby lots. 4:00 PM Party and Silent Auction Mountain View City Hall Rotunda Across the courtyard from the theater. Some of the auction items include: One week in Maui Bed and Breakfast packages in San Francisco and Pacific Grove areas Dinner at SF Fire Station and a ride on the truck! Signed Warriors Basketball Children's items Wine And much, much more Theater plus party $50* Theater only $35* Party only $20 Unable to attend but would like to support SMA research?
*Everything over $15 per person is tax deductible Families of SMA (FSMA) is volunteer run: 80% of your donation goes to research, 17% to patient services, and only 3% to general expenses Make checks payable to Families of SMA Mail to Families of SMA PO Box 3831, Los Altos CA 94024-0831 Spinal Muscular Atrophy (SMA) is the leading genetic cause of death of children under 2
1 in 6000 births is affected 1 in 40 is a carrier. No age or ethnic preference No cure, but needed research is on-going and promising The international scientific community agrees that, of all the neuromuscular diseases SMA is the closest to a cure. Because a cure is in sight, the National Institutes of Health (NIH) recently designated SMA as a model for their research program aimed at turning basic science into actual drugs and treatment.
- Several drugs that are FDA approved for other diseases are currently in trials for SMA.
- Leading scientists and clinicians worldwide expect that, with appropriate funding, and effective therapy for SMA can be achieved in 5 years or less.
For more information about SMA or about local children with SMA, see www.CureSMA.com or contact Marge Shively at 650-948-3192 Marge's granddaughter Jessica Fernandes was diagnosed with SMA Type 1 when she was 3 months old. She is currently 2 years old and has been in and out of the hospital with respiratory problems since she was 9 months old and has 24 hour nursing care at home. She is very intelligent and much like other 2 year olds, except that she is unable to move very much and needs one on one attention. Jessica lives with her parents, Linda and Cledwyn Fernandes in Fremont CA. They would be glad to talk with you and have digital pictures if you are interested. |