NIH Funding for Spinal Muscular Atrophy Research Up 60% Since 2008

February 23, 2011

NIH Funding for Spinal Muscular Atrophy Research Up 60% Since 2008

Press Release | February 23, 2011

The National Institutes of Health (NIH), the federal government’s medical research agency, released its most recent estimate of funding for disease categories which indicates that its base funding levels for SMA-related research has increased from $10 million in fiscal year 2008 to $16 million in fiscal year 2010.  An additional $3 million in one-time funding was provided to SMA-related projects in fiscal years 2009 and 2010, respectively, through the American Recovery and Reinvestment Act (ARRA).

Some of this  increase in federal resources devoted to SMA-related research is the result of the success of a two-pronged, long-term strategy of Families of SMA to provide seed funding for critical drug discovery programs in order to leverage federal (and private) resources, and to raise awareness of SMA and SMA-related research among federal policymakers through advocacy and grassroots efforts.

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Study with Funding from FSMA Shows a Muscle Specific Intervention Improves Phenotype in a Mouse Model of SMA

February 18, 2011

Study with Funding from FSMA Shows a Muscle Specific Intervention Improves Phenotype in a Mouse Model of SMA

Press Release | February 18, 2011

Dr. Charlotte Sumner and colleagues at Johns Hopkins University publish a study in the journal Human Molecular Genetics showing improvement in survival but not motor function in a severe model of Spinal Muscular Atrophy by increasing the levels of the muscle modulator Insulin-like growth factor 1 (IGF-1).

Spinal muscular atrophy (SMA) is an inherited motor neuron disease caused by the mutation of the survival motor neuron 1 (SMN1) gene and deficiency of the SMN protein. Severe SMA mice have abnormal motor function and small, immature myofibers early in development suggesting that SMN protein deficiency results in retarded muscle growth. Insulin-like growth factor 1 (IGF-1) stimulates myoblast proliferation, induces myogenic differentiation, and generates myocyte hypertrophy in vitro and in vivo.

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Disabled Students Declare Independence, by Design

January 2, 2011

Disabled Students Declare Independence, by Design

The Chronicle of Higher Education | January 2, 2011 | By Katherine Mangan

Until he went off to college, Leo Kullander relied on his parents and brother around the clock to help him with routine tasks like getting up in the morning, dressing, and using the bathroom.

Now the 20-year-old sophomore, majoring in engineering physics at the University of Illinois at Urbana-Champaign, enjoys a measure of independence unheard of for most students with severe physical disabilities.

Mr. Kullander has spinal muscular atrophy, a disease that causes muscles to degenerate and weaken to the point that many with the condition, like him, use motorized wheelchairs.

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FSMA is Proud to be Implementing a New Support Program for Newly Diagnosed SMA Families

December 17, 2010

FSMA is Proud to be Implementing a New Support Program for Newly Diagnosed SMA Families

Press Release | December 16, 2010

Everyone at Families of SMA is extremely proud to be implementing our latest program for newly diagnosed SMA families. We have had several conversations regarding better ways to support families and those that are newly diagnosed.  Thanks to Hillary & Keith Schmid, the FSMA Greater Florida Chapter and Audra & Andy Butler, we are excited to announce that Families of SMA has created a binder of information with specific resources for each state. These binders contain important information about SMA, as well as provide families with a list of available resources within their state.  The binders can also act as an organized place for families to keep important medical information concerning their child.

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FSMA Research Funding Leads to the Publication of 17 Journal Articles in 2010

December 17, 2010

FSMA Research Funding Leads to the Publication of 17 Journal Articles in 2010

Press Release | December 16, 2010

The research goal at Families of Spinal Muscular Atrophy is to accelerate the discovery and development of a treatment and cure for SMA. To help achieve this we fund basic research grants, along with later-stage drug discovery programs and clinical trials. FSMA research funding contributed to the results in 17 published articles in 2010.

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