Tri-Cities Voice Newspaper - What's Happening - Fremont, Union City, Newark California

March 16, 2004 > Second annual Spotlight on SMA

Second annual Spotlight on SMA

Saturday, 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
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 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.
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