What Does Independence Mean to the Duchenne Community?

July marks the 25th Anniversary of Americans with Disabilities Act (ADA), 50th Anniversary of Medicaid, and the dawning of a new age therapy development for our Duchenne community. But - as we all know - with new opportunities, come new challenges. As people with Duchenne grow up and grow into adulthood, barriers to 'independence' are found in our federal/ state/ local systems, policies, and resources.

As we at PPMD continue to push for access to effective therapies and improved health outcomes -- we are also committed to ensuring that we promote policies and systems that make sense for our growing Duchenne population – Adults! It is time for Medicaid to embrace the ADA and for “ADA 2.0.” Today, though, we are grateful for infrastructure that supports our community and look forward, with your help, to improve this foundation.

As we celebrate Independence Day weekend, we have asked some of the PPMD Adult Advisory Committee what independence means to them...

To me, Independence means... following my dream of being an Entrepreneur.

Thanks to the ADA, Medicaid, Duchenne research and treatments from the MD-CARE Act and NIH, FDA, and incredible legislation passed every day (such as the Affordable Care Act and Able Act), I am able to follow my lifelong dream of being an entrepreneur. In America, those of us with disabilities even as severe as Duchenne have the freedom and independence to chase whatever dreams we want to work hard to achieve. My family immigrated to the United States in large part because of my disease and the freedom disabled people enjoy in America. And now, as a citizen, I have the most independence imaginable and freedom to chase my dreams.

- Alan Chaulet

To me, Independence means... finding my way so I can help others do the same.

- Ben Dupree

To me, Independence means… venturing freely throughout my community, state, and country, working every day in my job to make those places better for people with and without disabilities, and enjoying life with my wonderful wife!

- Mario Damiani

To me, Independence means… traveling anywhere independently.  

- Pratik Awasthi

To me, Independence means… being able to be my own boss and explore the world.

- Anthony DeVergillo

To me, Independence means... Opening a restaurant featuring comfort foods.

- Paul Marcum

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Comment by Dee on July 4, 2015 at 2:06pm

To me, Independence means...Well even if I know Tim is gone, there is still thousands of other boys who suffer from the same disease and I don't want them to go through what Tim and other boys have gone through. They need that FREEDOM from this disease...need that cure NOW like yesterday. They belong to us...our son's. God gave us our boys for a reason, a purpose. Some have found that reason...while others have found their purpose. Its about REMEMBERING OUR SON's...its about saving them.

REMEMBERING TIMOTHY (www.RememberingTimothy

the DUCHENNE MEMORIAL Duchenne Memorial Wall.

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