News By Tag
* Spinal Muscular Atrophy
* More Tags...
News By Location
New Application Helps Twitter Users Contact Legislators about Spinal Muscular Atrophy
Thousands are using Tweet for a Cure to voice their support for Spinal Muscular Atrophy (SMA) research.
By: Fight SMA and the Gwendolyn Strong Foundation
Bill and Victoria Strong’s daughter, Gwendolyn (pictured to the right), was diagnosed with spinal muscular atrophy (SMA) at the age of six months. SMA is a neuromuscular disease that causes weakness and wasting of the muscles. In the most severe cases, it can rob its victims of the ability to crawl, sit, walk, breathe, eat, talk, or even smile. SMA is the leading genetic killer of children under two.
Not long after the SMA diagnosis, Bill and Victoria founded the Gwendolyn Strong Foundation (http://www.endsma.org)
Bill has harnessed the power of the Internet and social media for several campaigns that further his cause of raising much needed awareness of SMA. His latest effort is “Tweet for a Cure”. The Twitter application helps users send a “tweet” to their local legislators. The message asks the legislators to support the SMA Treatment Acceleration Act. The proposed legislation in the United States, written and backed by multiple SMA organizations, would help to clear the way for researchers to find a cure for the disease. Within one month of its launch, more than 2,600 people utilized “Tweet for a Cure”, reaching nearly two million Twitter users.
“Using social media, such as Twitter, Facebook, and even online petitions, organizations like ours can reach large numbers of people with less effort than it took just a few years ago,” said Strong. “We’
Bill’s online petition, which asks that legislators support the SMA Treatment Acceleration Act, can be found at www.petitiontocuresma.com. Since being created in July of 2008, it has gathered approximately 70-thousand digital signatures.
To find the “Tweet for a Cure” application, go to http://www.endsma.org/
About Fight SMA
Headquartered in Richmond, Virginia, Fight SMA (also known as Andrew’s Buddies) is an international nonprofit group dedicated to accelerating research for a treatment or a cure for spinal muscular atrophy (SMA), a neuromuscular disorder that kills more babies than any other genetic disease. The latest SMA news and research information is available at Fight SMA’s Spinal Muscular Atrophy Blog, at http://www.fightsma/