| July 21, 2008 |
Senator Obama Cosponsors SMA Treatment Acceleration Act! | Families of SMA first contacted the Senator's office about the legislation in September 2007, and has continued to urge the Senator's support since that time. This news is particularly meaningful since Sen. Obama represents Illinois, the home of the FSMA national office for almost 25 years! Read more details here....... |
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| July 18, 2008 |
Sen. Clinton Cosponsors the SMA Treatment Acceleration Act | Senator Hillary Rodham Clinton (D-NY) officially became a cosponsor yesterday of the SMA Treatment Acceleration Act. Families of SMA is profoundly grateful for her support and the efforts of our local families in securing her backing. See here for some additional exciting announcements. |
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| July 16, 2008 |
FSMA Family Creates Online Petition Urging Congress to Support the SMA Treatment Acceleration Act | Victoria and Bill Strong, whose daughter Gwendolyn has SMA Type I, have established an online petition to urge Congress to pass the SMA Treatment Acceleration Act. Please click on this link to be taken to the petition. Families of SMA urges all of our members to contact Congress and let them know how important it is to pass this critical legislation. |
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| July 15, 2008 |
SMA Family Selected for Extreme Home Makeover! | The Akers Family from Ohio was surprised with the door knock from the Extreme Makeover team. Check here for regular updates and to donate in honor of the family! |
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| July 10, 2008 |
Curt Schilling Supports Families of Spinal Muscular Atrophy at Fenway Park | Listen to the fantastic speech give by Red Sox pitcher Curt Schilling in support of Families of SMA at Fenway Park. “……if there is going to be a final dollar, someone is going to donate that final dollar that will make it happen. I would love to have it be mine……..” |
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| July 9, 2008 |
Multi-Center Trial of Valproic Acid and Carnitine in Infants with Type I Spinal Muscular Atrophy is Currently Recruiting at Six Centers | In April Families of SMA announced a new clinical trial designed to evaluate the combination of Valproic Acid (VPA) and L-Carnitine for the treatment of SMA in infants with Type I SMA, called Carni-Val Type I. This trial is fully funded by Families of SMA. See here for details on specific sites. |
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| July 1, 2008 |
Senator Kerry Video Just Released! | View the speech from Senator John Kerry (D-MA) to the Families of SMA Annual Conference, during which he indicates his strong support for Families of SMA and the efforts of the SMA community to identify a treatment and cure. Senator Kerry also announces that he has signed on as a cosponsor to the SMA Treatment Acceleration Act. Families of SMA thanks Senator Kerry for his strong support. |
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