This is SMA. And this is our story.
Two people have a chance meeting while at a bar with some friends one night. They hit it off. They go on a first date. They fall deeply in love. Get married. And start a family. Neither of them knows they both carry the gene responsible for spinal muscular atrophy (SMA), the leading genetic killer of young children. With every pregnancy, their children will have a 25% chance of being born with this brutal degenerative, terminal disease. They only learn...Read More »»
We’re so excited to announce the next bold step in SMA research funding for the Gwendolyn Strong Foundation (GSF); the official launch of the $250,000 “FightSMA and Gwendolyn Strong Foundation Emerging Investigator Awards"!
This innovative program builds on the legacy of the last 20+ years in SMA research by directly investing in emerging talent to ensure that today's incredible momentum continues in the SMA research community. But we’re not focusing on just one program. In April 2013, five...Read More »»
"Project Mariposa" is an initiative of the Gwendolyn Strong Foundation (theGSF) with a simple mission: to make the world more accessible to those with severe disabilities through targeted technology product grants. Mariposa is butterfly in Spanish -- theGSF's signature symbol -- and like a butterfly emerging from it's cocoon, Project Mariposa will help those with disabilities to spread their wings.
In 2012 theGSF implemented the first initiative in its Project Mariposa technology grant...Read More »»
February 27, 2013 >> The National Pediatric Research Network Act (NPRNA) is Reintroduced in the Senate
In a major step forward for the advancement of clinical research for Spinal Muscular Atrophy (SMA) and other pediatric disorders, the National Pediatric Research Network Act (NPRNA), was reintroduced in the U.S. Senate on February 27, 2013. The legislation’s introduction comes just weeks after a bipartisan companion bill (H.R.225) passed the House of Representatives by an overwhelming...Read More »»
"Say Hi! AAC" is an augmentative and alternative communication (AAC) and navigation iPad application that brings the world of basic communication to people with severe physical disabilities, limited movement, and/or challenged dexterity.
Install Say Hi! AAC on your iPad and create pages with groups of words or phrase boxes. A page can contain up to nine boxes and a box can have any combination of words, phrases, pictures, or recorded sounds. It's completely customizable to suit your...Read More »»
On the heels of the success of the "$200K For SMA -- Phase One" campaign, in March 2011 theGSF launched "$200K For SMA -- Phase Two" to fund the first ever SMA pre-clinical animal model. theGSF once again enthusiastically partnered with FightSMA and their esteemed scientific advisory board to fund groundbreaking research that will impact many facets of SMA research, including gene therapy, for years to come.
So, what will be funded through the $200K For SMA -- Phase Two commitment? >> We'll...Read More »»
"This is SMA." is an ongoing effort by theGSF with the simple goal of answering that first What is SMA? question in a visual and relatable way that leaves an impact.
theGSF created the This Is SMA. campaign in 2009 and have used a variety of tools to put a face to this brutal disease and create more understanding about who children with SMA are beyond statistics. theGSF utilizes targeted, blunt messaging to reach a broad global audience through unique social media campaigns. As part of this...Read More »»