Over the last few years, we have seen something rather phenomenal happen... Our Annual Advocacy Conference use to be made up of parents and relatives of people with Duchenne. But every year, more and more people with Duchenne are joining us on Capitol Hill to tell their own story. Tayjus Surampudi, a seventeen year old from New Jersey, joined us with his parents in D.C. for the first time. Already a well spoken advocate in his local community, Tayjus saw the importance of making the trek to our nation’s capital to tell his story in person to members of Congress. He shares the experience and we are grateful to have him - along with so many other people with Duchenne - who joined us in D.C.
We caught up with Tayjus just after he returned from his trip to D.C.
Hey Tayjus, and welcome back! Tell us a little bit about yourself…What year of school are you? How old are you?
I am in 11th grade and I am 17.
What do you enjoy studying? What do you want to do when you graduate from high school?
My favorite subject is history. When I graduate from high school I want to major in political science and economics, hopefully at Princeton University.
So out of curiosity, how do you explain Duchenne to people?
Duchenne is a neuromuscular disease that causes weakness in the muscles and eventually makes it difficult to walk.
You just got back from your first trip to Washington, D.C. with us. Tell us why you think it is important for parents to advocate for the sons? Why is it important for patients in the Duchenne community to advocate?
It is important for the parents to advocate because they are the main caretakers and they understand best what their sons need. It is even more important for patients in the Duchnne community to advocate because they understand the condition the best. They are living with the condition and their input is the most important and valuable.
What were some of the highlights of your experience in Washington?
The highlights of my experience at Washington were meeting Ryan Lochte and getting his autograph, and meeting the the NJ Congressmen, including Rush Holt, Jon Runyan, and Leonard Lance.
Finally, if you could have dinner with any three people, real or fictitious, living or deceased, who would you choose and why?
If I could have dinner with any 3 people I would chose have dinner with
Thanks so much for your time Tayjus and for going to D.C. We hope you’ll join us again in 2014!
Will Nolan, Communications Director
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