7-25-06 Christy Greene
The Honorable (full name) Dear Senator (last name): OR The Honorable (full
name) Dear Representative (last name): State up front that you are a constituent Briefly explain your personal experience with SMA Describe SMA - a sample paragraph you might want to include: Spinal Muscular Atrophy (SMA) is a term given to 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 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, sex or ethnicity and an astounding seven million Americans carry the gene that causes SMA. This debilitating disease causes personal hardship, emotional distress and economic costs on the entire family and community. Explain how far SMA Research has come - a sample paragraph you can include: There have been great strides in recent SMA Research. Some of these include: The successful mapping and cloning of the SMA gene, identifying the SMN2 protein, developing carrier testing, creating multiple mouse models, identifying a pathway of restoring full length SMN2 and identifying compounds through high throughput screening Sample Last Paragraph Because of these accomplishments, NINDS 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 constituent I urge you to increase funds 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 death of thousands. (Here add a personal sentence from your story) Suggestion! · It is best if your letters are kept to one page. · Include a picture · Due to routine screening, it is best if you can fax your letters. Please email lac@fsma.org a copy of your letter If you need help call 800-886-1762 Please also send a photocopy of any responses you get to: FSMA - LACP.O. Box 196 Libertyville, IL 60048-0196 or fax FSMA at (847) 367-7623 |