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FightSMA-Funded Gene Therapy Program to Begin Human Trials
These are exciting times for SMA research! A FightSMA-funded gene therapy program led by Dr. Brian Kaspar at Nationwide Children’s Hospital is gearing up to commence phase I human clinical trials. This...
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NPRNA Champions to Be Honored this Week by National Organization for Rare...
On Thursday, May 8, 2014, the National Organization for Rare Disorders (NORD) will honor Congressman Fred Upton (R-MI) and Senator Sherrod Brown (D-OH) for their tireless efforts to pass the National...
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21st Century Cures Roundtable
On Tuesday, May 6, the House Energy and Commerce Committee hosted a roundtable discussion to introduce the 21st Century Cures initiative, which is aimed at exploring ways to modernize medical research...
View ArticleFightSMA-Funded Gene Therapy Program
FightSMA-funded gene therapy program, led by Dr. Brian Kaspar at Nationwide Children’s Hospital, has now moved to clinical trial and formally begun enrollment. This trial will utilize chariSMA(TM), the...
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9th Annual Ride for Corinna’s Angels
FightSMA is excited for the 9th Annual Ride for Corinna’s Angels event! We are so appreciative of the wonderful Calise Family for throwing this event for the 9th year! The event starts at 9:30AM on...
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21st Century Cures: House Holds Hearing on Modernizing Clinical Trials
On Wednesday, July 9th, the House Energy and Commerce Committee continued its series of hearings on the 21st Century Cures initiative, which was launched earlier this year by Reps. Fred Upton (R-MI)...
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FightSMA Thanks Congressman Cantor for His Longtime Advocacy
Congressman Cantor with Desiree (L) and Joie at the FightSMA Annual Conference, Capitol Hill, 2005. FightSMA wishes to extend our heartfelt thanks to Congressman Eric Cantor (R-VA), who announced...
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ALS Support Leads to SMA Awareness
“It began with a 1990 solicitation letter, which Joe Slay wrote to friends on a second-hand McIntosh computer purchased for that purpose. A helpful woman at the Muscular Dystrophy Association had...
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FightSMA: Hill Update
FightSMA and the Coalition for Pediatric Medical Research met with House Energy and Commerce committee Chairman Fred Upton (R-MI) on September 10, 2014, to discuss NIH’s pending implementation of the...
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2014 NINDS Nonprofit Forum
This week, FightSMA was proud to be an NINDS Invited Participant of The 2014 NINDS Nonprofit Forum. The Forum provides an opportunity for nonprofit leaders to engage in discussions with NINDS staff and...
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