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 [...]
Pepsi Refresh Ideas that Help Kids
We are crowdsourcing ideas from the Pepsi Refresh ideas campaign. If you know of a pending idea that benefits kids with rare disease, please post the url on the wall of the Children’s Rare Disease Network Facebook page so that we can add it to the Pepsi Refresh tab. Vote this link, cut and paste [...]