Families of SMA Is Now Cure SMA
- By Laurie Watanabe
- Sep 22, 2014
Families of Spinal Muscular Atrophy has changed its name to Cure SMA.
In a news release, Cure SMA President Kenneth Hobby and Chair of the Board of Directors Richard Rubenstein said of the new name, “It’s a big change that comes at a time of great progress and promise for our community. In the last decade, we’ve taken huge strides together, thanks to your passion and support, and today there are more clinical trials and more paths to a treatment than ever before.”
The organization says spinal muscular atrophy, which severely affects motor nerves in the spinal cord, is the number one genetic cause of death for infants. Families of SMA was a major supporter of research and drug trials to find a treatment and a cure for spinal muscular atrophy. Cure SMA says it will spend an additional $1.8 million on research funding in the next year.
“With that sense of progress in mind, our board has thoughtfully examined Families of SMA’s communications, ultimately deciding on the changes we need to make to build on the successes we had,” Hobby and Rubenstein said in the announcement. “In order to continue growing, we need to speak clearly to a wider audience, and that’s our primary goal in making these changes – to attract even more people to be a part of our work so that we can accelerate momentum toward a treatment and cure.”
In addition to the name change, the announcement said the organization would take on a “new look” and had created a new Web site with the goal of making it easier for stakeholders “to find information and connect with each other, and for all of our fundraisers to plan and host successful events.”
The new name, Hobby and Rubenstein added, “is our vision, and it’s also our rallying cry – it’s why we keep funding research and raising awareness.”
Laurie Watanabe is the editor of Mobility Management. She can be reached at email@example.com.