In a few weeks, PPMD will be hosting a Policy Forum on clinical trials of experiment agents This is a landmark meeting that will include participation from the FDA. It will also include Ansel Lurio, our Featured Voice for November. Ansel is a 29-year-old with Duchenne and has a great deal of experience sharing his story with decision makers and industry professionals. His charisma, his eloquence, and his willingness to share his story, we believe, will help guide the FDA and will be a great representation of the Duchenne patient community. Meet our Featured Voice for November, Ansel Lurio.
Meet Ansel Lurio
Thanks for taking some time to speak with us Ansel and thank you for participating in the upcoming Policy Forum. Tell us a little bit about yourself. How old are you? What is your educational background?
I’m 29. I have a BA from Columbia University and a MA from SUNY - Oneonta.
What did you study in school? What career are you pursuing?
At Columbia I studied American Studies and at SUNY - Oneonta I studied History Museum Studies. I’m pursuing a career in museum education.
How do you explain Duchenne to people? How has that changed over the years for you?
I explain Duchenne by first telling people it is a muscle wasting disease. I then continue to explain how most people’s muscles repair themselves after use with a protein called dystrophin, but that my muscles can’t make that protein. I also explain that it is a genetic condition and that it affects males and makes females carriers. My explanation over the years has become more technical.
You will be speaking at PPMD’s Policy Forum in December. Tell us what contribution you hope to make at this event or the take away you hope the FDA will get from your speaking.
I hope that the FDA understands that Duchenne is not just a pediatric disease but that it affects adults such as myself.
How else have you advocated for people with Duchenne or rare disease in the past?
I have spoken about my experience with disabilities at a number of venues including Parent Project Muscular Dystrophy's Annual Connect Conference, Genetic Diseases of Children Conference, and a few colleges. Some of my appearances have been tied in with my mother, Penny Wolfon’s book, Moonrise.
What advice do you have for a person with Duchenne or family member that wants to take on a more active role in advocacy?
Don’t be afraid to speak about your personal experiences.
What were some of the highlights of your experiences advocating?
One of the highlights was speaking at the Connect Conference as I was on a panel with other young men with Duchenne which gave me a great sense of camaraderie.
Finally, if you could have dinner with any three people, real or fictitious, living or deceased, who would you choose and why?
I would have dinner with Stephen Hawking, as he is a great example of what someone with a neuromuscular disease can accomplish, Bruce Springsteen, as I find his songs speak to me on a personal level, and Randolph Bourne, as we was one of the first people to really talk about what it’s like to live with a disability.
Thanks for your time Ansel and thank you for representing the Duchenne community at next month's Policy Forum.