I would ask that any of you who can help us with this campaign. If you were able to help with the earlier FSMA campaigns, this is a great chance to do something else, or if you were unable to participate before, this is another chance to do some good! Please help with this if you can!
To Our Friends at crashdown.com
We are trying to help the Families of SMA in a letter writing campaign to Congressmen and Senators to encourage them to increase funding to fight SMA.
A lobbyist friend of ours, Raymond Pearl, helped to compose several letters and we sent them off to all of our representatives. We then asked him to compose a generic version of the same letter so that we could get friends and family to participate. I’ll attach that generic letter to this, so people who are interested could just throw in their own names, their representatives names (which they can look up by clicking the links below), and they can alter the letter in any way they see fit — if they want to mention how they became aware of the disease, etc.
Letters need to be in by Sept 1, so it would be best if you could Fax them! The Anthrax scare has delayed mail by at least 2 weeks.
Again, thanks for all your help.
(for the US House of Representatives)
(for the US Senate)
August 13, 2002 VIA FACSIMILE
The Honorable _____ ______
U.S. House of Representatives
Washington, DC 20515
Dear Representative _______,
I am writing to bring your attention to an issue that is neither a partisan issue nor an issue you hear about everyday. It is, however, a real issue that affects far too many lives – ours among them. With your background in Congress as a passionate advocate, we hope that you can help focus the nation’s energy on an important battle to cure Spinal Muscular Atrophy (SMA).
SMA has touched the lives of a family that is very dear to us. Their son, Zeke, was diagnosed with this disease when he was 15 months old. He was born a seemingly healthy child who brought nothing but joy and happiness to his family. At the age of approximately 8 months, his doctors noticed that he started falling behind other babies his age. He was unable to pull up to a standing position and then he stopped using his legs altogether. After months of testing and waiting, the doctors gave the family the news no parents should ever have to receive. Zeke was diagnosed with SMA.
SMA is a group of inherited diseases that destroy the nerves controlling voluntary movement such as crawling, walking, head and neck control and even swallowing. It is, unfortunately, the primary genetic killer of children under the age of two, and one of the most prevalent genetic disorders overall. This disease discriminates against no one by age or by ethnicity. There are seven million Americans that carry the gene that causes SMA. The millions of children in this country with Spinal Muscular Atrophy NEED YOUR HELP!
We urge you to increase funding for SMA research. SMA research has already come so far but we have so much more to do. Because of the important accomplishments thus far, the National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH) is looking at SMA as the model for their translational program. Now more than ever money and support is needed to move basic science into clinical trials. As your constituents, we urge you to increase funding for SMA research. 10 million dollars a year for the next five years will put us all closer to the end of this needless suffering and the death of thousands. Please consider our sincere request for assistance.
Your phone number