July 1, 2021 / Advocacy,Care,Community,Research

PPMD Is Moving to Washington, DC!

PPMD’s Main Office is Moving to Washington, DC!

When Parent Project Muscular Dystrophy started in 1994, formed by a small group of parents and grandparents out of Ohio, we knew that one of our first priorities was to travel to Washington, D.C. to give a voice to the thousands of families affected by Duchenne. We had to educate our nation’s leaders to get the federal support needed to make real progress in research, drug development, and care.

As the organization grew, we established an office in New Jersey (central transportation to major cities, including D.C., as well as Ohio), funding research centers across the country and early-stage research grants. We expanded our team and network of families, increased our investments in research, developed the first patient-reported registry in Duchenne (The Duchenne Registry), and regularly convened stakeholders around the world. We fostered relationships with the National Institutes of Health (NIH), the Centers for Disease Control (CDC), and the Food and Drug Administration (FDA), knowing how critical leveraging their resources and expertise would be to achieving our goals. We helped write and ensure passage of the MD-CARE Act, ushering in a new era of federal investment and focus on Duchenne and Becker.

Over the years, our trips to D.C. have become more frequent, more necessary, more urgent. We knew, and still know today, the need to be present in Washington D.C., advocating to drive policy and ensure equity for federal investment and focus on Duchenne and Becker. PPMD proudly holds the title for the longest running annual Advocacy Conference for a rare disease in the country, with two decades of advocacy in Washington D.C. (That title is because of you!)

Today, with 5 U.S. drug approvals in Duchenne, 40+ companies working on additional potential treatments in various stages of development, genetic therapies on the horizon, the necessity for pursuing combination therapies, and the need to engage policy makers around access and reimbursement issues, we knew that establishing a permanent base in Washington, D.C. would be our next best step.

Our New Main Office in Washington, D.C.

PPMD has worked with our partners at the EveryLife Foundation on policy for many years. Several years ago, we established a small office space within The Rare Hub, the foundation’s shared community work space created to foster collaboration and innovation among rare disease organizations in the heart of Washington, D.C.

With increased momentum in D.C., our office at The Rare Hub has provided PPMD with the perfect place to land as we continue to advocate for impactful legislation and policy that advances the equitable development of, and access to, lifesaving diagnoses, treatments, and cures. We are thrilled to announce our space in Washington, D.C. will now officially become PPMD’s main office location:

Parent Project Muscular Dystrophy
The Rare Hub – 1012 14th Street, NW, Suite 500
Washington, DC 20005

PPMD is grateful to EveryLife Foundation for the opportunity to call this centralized space our new home.

While our incredible staff remains working remotely across the country, this new main office gives us the ability to expand our team in our nation’s capital, so we can continue to educate our nation’s leaders and advance the legislation and regulatory policies that will impact the lives of our Duchenne community.

We look forward to connecting with you out of D.C.!

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