First-Ever Web Video Updates the State of Spinal Muscular Atrophy Research
Online PR News – 16-June-2009 – – (Richmond, Virginia) – The FightSMA (http://www.fightsma.org) annual Spinal Muscular Atrophy Conference, The Good Fight, featured many firsts. One of the most important to SMA families was the first-ever webcast of the “Friends and Family” portion of the conference. Now, Fight SMA is announcing that the video from that webcast is available for online viewing and download.
Founded in 1991 in Richmond, Virginia, Fight SMA is an international non-profit organization dedicated to finding a treatment or cure for Spinal Muscular Atrophy (SMA), the leading inherited killer of children under two. The neuromuscular disease affects the victim’s motor neurons, causing muscle atrophy, loss of strength, and disability. The majority of children who are born with SMA die prematurely due to respiratory complications.
The 2009 FightSMA Annual Conference, held in late April, included events for both researchers and SMA families. The webcast of the Families and Friends portion of the conference was made available free of charge, and allowed those who were unable to travel to the event location in Washington D.C. the opportunity to learn from and interact with the presenters. Utilizing the webcast were 30 individuals and families from 13 states in the U.S. and a total of four countries. The response from the webcast participants was overwhelmingly positive.
“We were thrilled with the success of our first conference webcast, and we’re very excited to be able to make this video available,” said FightSMA President Martha Slay. “Families facing SMA need all of the information they can get about research, and the scientists who attended our conference are some of the best in the world.”
The video features the “Basic Science Update”, one of two panel discussions during the Families and Friends Conference. FightSMA's Science Director Dr. Chris Lorson from the University of Missouri in Columbia led the discussion. He presented the most current information available about the search for an SMA cure.
To view and download the video, please visit the 2009 Spinal Muscular Atrophy Conference page on the Fight SMA website. The page can be accessed via a link on the front page of the FightSMA site, or at http://www.fightsma.org/index.php?annual_meeting_2009 .
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. For more information on spinal muscular atrophy and FightSMA, please visit http://www.fightsma.org. The latest SMA news and research information is available at the Spinal Muscular Atrophy Blog.