News: 2009
03-Dec-2009
Isis Pharmaceuticals announces SMA drug candidate program based on the work of the SMA Foundation- funded investigator Adrian Krainer (Cold Spring Harbor Laboratory)read more »
20-Nov-2009
Making progress! SMA Treatment Acceleration Act Cosponsors total 62 in the House and 15 in the Senate.read more »
02-Nov-2009
Where does the SMA community stand in regard to progress with the SMA Treatment Acceleration Act? Click here for answers to frequently asked questions.read more »
27-Oct-2009
The SMA Foundation congratulates Families of SMA and Repligen Corporation on their licensing deal
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23-Oct-2009
SMA Treatment Acceleration Act Co-sponsor tally: House of Representatives – 56 Senate - 13 The SMA Foundation is pleased to announce that the total number of cosponsors for the SMA Treatment Acceleration Act has reached 56 in the House of Representatives and 13 in the Senate. If passed, the SMA Treatment Acceleration Act will:read more »
18-Aug-2009
Three congressmen and two senators add to the list of SMA Treatment Acceleration Act cosponsors... Congressmen Steve Israel and John Hall of New York, Congressman Harold Rogers of Kentucky, Senator Jack Reed of Rhode Island, and Senator Roger Wicker of Mississippi recently added to the cosponsor list for the SMA Treatment Acceleration Act of 2009, bringing the total number of cosponsors to 32 in the House of Representatives and 9 in the Senate. The complete list of SMA Treatment Acceleration Act cosponsors to date is included below.read more »
24-Jul-2009
August Recess Update - Contact your Congressman about the SMA BillFirst and foremost, thank you for all you have done to help us increase awareness and attention towards our efforts to accelerate treatment and cure discovery for Spinal Muscular Atrophy (SMA). We are especially grateful to all of you who have taken the time to contact your Members of Congress in support of The SMA Treatment Acceleration Act of 2009 (H.R. 2149/S. 1158).
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26-Jun-2009
Grassroots Update on the SMA Treatment Acceleration ActJune 26, 2009
First and foremost, thank you for all you have done to help us increase awareness and attention to finding a treatment or cure for Spinal Muscular Atrophy (SMA). We are especially grateful to all of you who have taken the time to contact your Members of Congress in support of The SMA Treatment Acceleration Act of 2009 (H.R. 2149/S. 1158).
read more »
01-Jun-2009
SMA Treatment Acceleration Act - Nationwide Call to ActionJune 1, 2009
Today, we are issuing a “Nationwide Call to Action” for all SMA families, researchers and friends to help engage every Member of Congress in support of this legislation and we are asking for your help! PLEASE write your Representative and Senators asking them to sign on as a Cosponsor to the “SMA Treatment Acceleration Act of 2009”
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28-May-2009
Dr. Hung Li, 11/9/63 – 3/7/09We note with sadness the passing of Dr. Hung Li, a pioneer in Spinal Muscular Atrophy research, in March of this year. Dr. Li was passionate about SMA basic and therapeutic research, committed to high-quality science and doing the right thing for SMA patients and families. His contributions to the field include the introduction of new mouse models, preclinical testing paradigms, methods for determining SMN genotype and expression levels, and early tests of such HDAC inhibitors as sodium butyrate and valproic acid in SMA model mice. His findings were translated into a small-scale clinical study with valproate, with encouraging preliminary results for adult patients.
His tenure at Academia Sinica leaves a legacy of important SMA research and we are grateful for Dr. Li's tireless efforts.
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22-May-2009
SMA Treatment Acceleration Act Introduced in the U.S. SenateWe are very pleased to announce that legislation to enhance federal support for Spinal Muscular Atrophy (SMA) research, S. 1158, the “SMA Treatment Acceleration Act of 2009”, has been introduced in the Senate by Senator Debbie Stabenow (D-MI) and Senator Johnny Isakson (R-GA). Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA) introduced companion legislation, H.R. 2149, in the House on April 28, 2009. On behalf of our organizations and the families affected by this deadly disease, we want to express our gratitude and thanks to Senators Stabenow and Isakson and Congressmen Kennedy and Cantor for their leadership.
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12-May-2009
PTC Therapeutics and Spinal Muscular Atrophy Foundation Announce $8.5 million Small Molecule Development CollaborationPTC Therapeutics, Inc. (PTC) and the Spinal Muscular Atrophy (SMA) Foundation today announced the expansion of their research collaboration in which the SMA Foundation will provide up to $8.5 million in funding to PTC. This is the second continuation of the collaboration to fund a series of research projects initiated in 2006 to identify and optimize compounds with the potential to treat SMA by increasing production of the survival motor neuron (SMN) protein. The lack of the SMN protein causes SMA. Total funding for the initiative is now $11.7 million.
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29-Apr-2009
SMA Treatment Acceleration Act Introduced in the U.S. House of Representatives April 29, 2009We are very pleased to announce that legislation to enhance federal support for Spinal Muscular Atrophy (SMA) research, H.R. 2149, the “SMA Treatment Acceleration Act of 2009”, has been introduced in the U.S. House of Representatives by Congressman Patrick Kennedy (D-RI) and Congressman Eric Cantor (R-VA). On behalf of our organizations and the families affected by this deadly disease, we want to express our gratitude and thanks to Congressmen Kennedy and Cantor for their leadership.
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27-Mar-2009
SMA Foundation Announces Completion of Biomarker Study EnrollmentSMA Foundation Announces Completion of Biomarker Study Enrollment
More than 100 patients recruited in just 4 months.
NEW YORK, NY – March 27, 2008 - The Spinal Muscular Atrophy (SMA) Foundation, a nonprofit organization dedicated to accelerating the development of a treatment for SMA, is pleased to announce the completion of enrollment for the pilot study of Biomarkers for Spinal Muscular Atrophy (BforSMA).
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03-Feb-2009
SMA Treatment Acceleration Act Update for Families 2009Dear Families,
With the start of a new year, a new Congress, and a new Administration, we want to take this opportunity to provide you with an overview of the successes of the past year in building support for the SMA Treatment Acceleration Act and an update of next steps going forward.
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29-Jan-2009
Biomarker Study Recruitment UpdateThe Biomarkers for Spinal Muscular Atrophy (BforSMA) clinical trial is a current pilot study looking to identify potential biomarkers (measures) that can be used to evaluate SMA disease severity and future treatments. Recruitment is ongoing and as of January 29, 2009, 71 subjects have been recruited from 18 clinical sites in the United States and Canada. An additional 49 SMA patients between the ages of 2 and 12 are needed for the study and we hope to close enrollment soon. We are looking for SMA families within driving distance of the clinical sites to participate in this one day study. For more information about the BforSMA study and for a list of enrolling sites, please click here.
For more information on other SMA trials and the International SMA Patient Registry is recruiting for, please see the press release below.
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Visit the International SMA Patient Registry
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