First-of-it’s-kind iPad Communication App
Gwendolyn Strong Foundation (theGSF) launches first ever iPad Communication App The demand for health information on the web continues to increase. With the utilization of digital products in healthcare, trends toward technological solutions in improving our health is gaining momentum. For those in the Rare Disease Community dealing with physical limitations precluding them from engaging [...]
Counsyl Has Generously Donated Free Genetic Tests to Help Raise Awareness of SMA
August 28, 2011 By Bill Strong At the Gwendolyn Strong Foundation, we want as many people as possible to know that 1 in 40 people unknowingly carry a severe mutation in the SMA gene. Getting tested before pregnancy is one of the best ways to make sure that your child does not fall victim to a possibly [...]
August is Spinal Muscular Atrophy Awareness Month
Spinal muscular atrophy (SMA) is the leading genetic cause of death in babies under the age of two. It affects families of all ethnic predilections, often with no prior history of the disease. Newborns with SMA appear healthy, but over time their lack of muscular development is debilitating. While intellectual development remains normal, muscle weakness [...]
Carrier Screening in the Era of Genomic Medicine
“It’s not so bad to find out that you are a carrier…[but] finding out that you are a carrier of SMA [spinal muscular atrophy] from your child dying is the wrong way to do it.” -Deborah Heine, executive director of the Claire Altman Heine Foundation Like many parents of children with rare genetic diseases, Deborah [...]
The Global Genes Project Aims to Battle Rare Disease Through the 'Vote4Hope' Campaign and Pepsi Refresh Competition
The Global Genes Project Aims to Battle Rare Disease Through The ‘Vote4Hope’ Campaign and Pepsi Refresh Competition Over 15 Million Children in America Are Estimated To Suffer From 7000 Unique Rare Diseases; Children Unite As ‘Ambassadors of Hope’ To Win $250K Pepsi Grant For The Global Genes Fund DANA POINT, CA – September 1, 2010 [...]