Interview with Amy Bredeson about Tuberous Sclerosis Alliance
Interview with Amy Bredeson about Tuberous Sclerosis Alliance
Matt: Tell us a little about yourself.
Amy: I'm a wife and mother of two. I'm a freelance journalist and a volunteer with the Tuberous Sclerosis Alliance. Ever since my daughter, Chloe, was diagnosed with tuberous sclerosis complex in 2010, I have been passionate about raising awareness and raising money for research into a cure.
Matt: What is Tuberous Sclerosis Complex?
Amy: Tuberous Sclerosis Complex is a genetic disease that causes tumors to grow in the vital organs, particularly the heart, brain, lungs, skin, kidneys and eyes. It is the number one known genetic cause of autism and epilepsy. Recent studies indicate that more than 80 percent of individuals with TSC will have epilepsy at some point in their lives. Approximately 50 percent of individuals with TSC develop autism. The rate of autism in the general population is substantially lower (around 1 percent of the total population), so there is clearly a very substantial increase in the rate of ASD in children with TSC.
Matt: What are the details for the TSC walk?
Amy: Registration will begin at 9 am. We will have a superhero yoga class at 9:30, and the walk will begin at 10. The theme for the walk is superheroes, and our honorary chair, Hilton Head Island Mayor David Bennett, will be there dressed as Superman! SC Sen. Tom Davis is expected to speak briefly about his work to legalize CBD oil, which comes from the marijuana plant, and how it is helping people who suffer from epilepsy. We will have a big celebration after the actual walk, and DJ Crush of Crush Entertainment will be there to play music for us. We will have face painting and other fun activities for kids, free lunch provided by Chick-fil-A, Pizza Hut and Street Meet. Hilton Head Island firefighters will be there to show off their firetruck, and Kona Ice be selling ice-cold treats to benefit the TS Alliance.
Matt: What superhero are you going to dress up as and why?
Amy: Ha! I will be dressed as Supermom! No fancy costume, just my new Step Forward T-shirt, some yoga pants and, of course, my trusty cape!
Matt: What is your favorite part about the walk?
Amy: My favorite thing about the walk is seeing how many people truly care about this cause and want to make a difference, not only for my little Chloe but for the other 1 million people worldwide who are fighting this disease. It's a wonderful reminder that there are good people in this world who take the time out of their busy day to help others.
Click here to sign up and join Lowcountry Therapy Center’s team for the walk!!http://giving.tsalliance.org/site/TR/Step_16/StepForward?team_id=5491&pg=team&fr_id=1330
For more information about the walk click here http://giving.tsalliance.org/site/TR?fr_id=1330&pg=entry
Here is a link for more information on Tuberos Sclerosis http://www.tsalliance.org/pages.aspx?content=2
-Matthew D’Antonio, PT, DPT
Pediatric Physical Therapist
