Our Featured Voice for February 2012 is 18-year-old Jonathan Piacentino, a second semester freshman at Nazareth College. PPMD’s Advocacy Conference, held in the first quarter of each year, is the only officially organized gathering on Capitol Hill for the Duchenne community. Each year, participation at the PPMD Advocacy Conference grows. Scheduled visits on Capitol Hill are arranged for all attendees, giving a face and a voice to PPMD’s advocacy agenda.
Jonathan and his family have actively advocated for the Duchenne community in Washington, D.C., for many years now. Jonathan has made sure that the voice of the patient is a voice that lawmakers here. We spoke to Jonathan at college to find out what advice he has for families new to advocacy.
Hi Jonathan and thanks for taking a minute out of your studying to talk to us! Tell us a little bit about yourself: how old are you and what are you studying?
I am 18 and a second semester freshman in college. I’m majoring in Biological Studies.
What would you like to do when you graduate?
Hopefully become a reputable zoologist.
What are some of your fondest experiences?
My fondest memory was meeting Congressman Jim Walsh in his DC office and seeing his view of the Capitol from his desk.
Wow, that is a great memory! So if a newly diagnosed family or even just a parent who hasn’t done the advocacy thing, asked you why is it important for parents to advocate for the sons – what would you tell them? Why should they go to Washington?
Parents should go and advocate, because without standards of care and access to new treatments, their sons will not get the care they need in order fulfill their ambitions.
And what about patients in the community? Why is it important for patients in the Duchenne community to advocate?
Because we are the ones experiencing Duchenne, and it gives Congress a better understanding of the disease itself and why it’s important to support our requests.
What will you be doing this year to advocate from home? What are some easy things you would recommend someone do from their hometown if they can’t go to DC?
Schedule a meeting with my Congressional Representative and participate in PPMD's email campaign. I recommend everyone to do the same thing.
Okay, enough politics…something fun. If you could have dinner with any three people, real or fictitious, living or deceased, who would you choose and why?
Will Nolan, Communications Director
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