Photo Courtesy Of FightSMA
NFL Hall of Famer Howie Long on Capitol Hill at a FightSMA event to raise awareness for Spinal Muscular Atrophy.
Each Week Cause Celeb highlights a celebrity's charity work. This week, we speak to Howie Long about his involvement with FightSMA.
Howard "Howie" Long is a former National Football League defensive end and actor and was inducted into the Pro Football Hall of Fame in 2000.
FightSMA, known legally as “Andrew’s Buddies Corporation,” was created to accelerate the search for a treatment and cure for spinal muscular atrophy (SMA), the number-one inherited cause of infant death. SMA is a group of inherited diseases that cause muscle damage and weakness. The symptoms get worse over time and eventually lead to death. FightSMA is dedicated to raising awareness and funding SMA research. August is SMA month.
Denise Karabinus Telang & Trimbak Telang Family Photo
Julius Trimbak Telang's six month birthday. June 7, 2012 - January 2, 2013
This article is dedicated to Julius Trimbak Telang June 7, 2012 - January 2, 2013.
Interview Conducted Via Email By: Giacinta Pace
Q: What is FightSMA?
Howie: FightSMA is a nonprofit group created by parents of children with spinal muscular atrophy (SMA.) SMA is a deadly neurodegenerative disease that robs children of the ability to walk, stand, and in severe cases, even to breathe and eat on their own. It is the number-one inherited cause of death in children under two. FightSMA has awarded research grants at more than 40 universities and research institutions in the United States, Canada, the United Kingdom, France, and Italy.
Q: How did you get involved?
Howie: I learned about FightSMA from a family in Virginia where I live. I was immediately struck by the great fighting spirit of the children and families involved in this struggle. They have supported vital research, pushed for legislation in Congress to deepen research support, brought new levels of awareness to the disease, and given new hope to many, many families across the country and around the world.
Q: What is one thing people don’t know about SMA that they should know?
Howie: There is very exciting work under way now to defeat this childhood killer. The gene responsible for SMA has been discovered and a range of promising compounds are being tested and research strategies developed to develop a treatment. We are getting closer and closer to the finish line.
Q: You are very generous with your efforts to help this organization. What is the nicest thing someone has done for you?
Howie: So many people have impacted my life over the years - teachers, coaches, relatives - that is one of the reasons why I wanted to do this interview. I have always felt a responsibility to pay it forward.
Q: Is there anything else you would like to add?
Howie: It is important to understand that the particular genetic character of SMA means that SMA research also advances work in other diseases. So, by supporting SMA research, you’re helping other disease efforts as well. That is very exciting. I would encourage everyone to go to www.fightsma.org and learn more and join this fight. It is a worthy effort, and one that needs to be brought to more people’s attention.
First published August 14 2013, 1:33 PM