November 27, 2013 >> President Obama Signs the National Pediatric Research Network Act (NPRNA) Into Law
On Wednesday, November 27, 2013, the National Pediatric Research Network Act (NPRNA) was officially signed into law by President Obama. The NPRNA was approved as part of a health package known as the PREEMIE reauthorization act (S.252) and will have a powerful impact on pediatric rare diseases like SMA. Specifically, this legislation authorizes the National Institutes of Health (NIH) to...Read More »»
In December 2012, the Gwendolyn Strong Foundation was selected by Chase as 1 of 25 nonprofits for their American Giving Awards. The GSF had a chance at $1 MILLION and for the first time Spinal Muscular Atrophy (SMA) was highlighted to millions on national television alongside other worthy causes: Poverty, Illiteracy, Autism... And that is powerful! SMA was alongside them because SMA matters too!Read More »»
Once again, with your incredible support we have built on the wave of momentum from the "$200K For SMA -- Phase One" campaign to place a material, targeted grant in the hands of a macro focused SMA research program. In just a matter of months since launching "$200K For SMA -- Phase Two" in parthership with FightSMA in December 2011, we awarded $100,000 to Dr. Monique A. Lorson and University of Missouri in support of Dr. Lorson's research focused on developing a large animal model of Spinal...Read More »»
Goal set, goal met, goal exceeded. Once AGAIN! Six months. Thousands of donors. Hundreds of organizers. 60+ fundraisers. Together we not only raised $200,000 for promising SMA gene therapy research. We raised $250,000+! That's inspiring! That's awesome! And together we have once again made a difference in moving promising SMA research forward.
In July 2010, GSF created the "$200K For SMA -- Phase One" campaign to fund groundbreaking gene therapy research at Nationwide Children's Hospital...Read More »»
In August 2010, the Jimmie Johnson Foundation selected the Gwendolyn Strong Foundation as one of ten charities for their annual Samsung Helmet of Hope highlighting nonprofit work focused on children's needs. For this honor theGSF received an immediate $10,000 grant and our logo appeared on the Helmet of Hope worn by NASCAR champion Jimmie Johsnon in the Pepsi 400 race. For the 2010 Helmet of Hope an additional voting contest was created, in which theGSF was awarded a $20,000 grant.Read More »»
In June 2010, theGSF made a $10,000 grant to SMAspace.com, a critical SMA online patient and family networking resource. Started in 2008 by Maryland based nonprofit Emminea, SMAspace has filled a massive void in access to actionable information and support for patients and families impacted by SMA.
An SMA diagnosis is completely life-altering for families, impacting every aspect of one's life. Through SMAspace, Eminnea has created an open, unbiased forum for families and medial...Read More »»
Just a few months after establishing the Gwendolyn Strong Foundation, theGSF won a much sought after $125,000 grant from the Chase Community Giving program. Garnering 52,000 unique votes in just eight days, theGSF placed 6th out of 500,000 charities. A true grassroots movement with thousands of volunteers helping to spread the word, many organizations, celebrities, and publications got behind the SMA cause in a big way. And because of their help, theGSF was among the "Winners Circle" and was...Read More »»
5,000 miles driven. Over 15 newspaper articles written, four nightly news segments aired, and two radio interviews broadcast. theGSF's first official fundraiser. Over $44,000 raised.
What started as a personal journey to introduce Gwendolyn to her 104-year-old great-grandfather in the summer of 2009, quickly turned into an opportunity for SMA. Knowing 5,000 miles would be crossed over a month, passing thousands of people with stops all along the way, theGSF created "Sponsor-A-Mile" to help...Read More »»
theGSF launched "Tweet For A Cure" in September 2009 to allow constituents to voice support for the SMA Treatment Acceleration Act directly to their Members of Congress via Twitter. In less than a month this unique, custom Twitter application reached over 1.5 Million people and added much needed pressure in support of this important SMA legislation in Congress.
The Tweet For A Cure application was simple and effective, allowing users to enter their ZIP code to auto-target dynamic tweets...Read More »»
In just a week after launching "PetitionToCureSMA.com," over 2,500 signatures were gathered. By 19 days it had grown to 10,000. And in six months PetitionToCureSMA.com had exploded to an amazing 50,000 unique signers in support of SMA legislation. And what was most important, these signatures were having an impact on Capitol Hill. Since that time, PetitionToCureSMA.com has succesfully garnered over 100,000 signatures, raised awareness of SMA, generated media coverage, and its use increased...Read More »»