PPMD Welcomes Annie Kennedy as Senior Vice President of Legislation & Public Policy

HACKENSACK, N.J., Sept. 9, 2014 /PRNewswire-USNewswire/ --Pat Furlong,Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), the leading advocacy organization working to end Duchenne muscular dystrophy (Duchenne), announced today that Annie Kennedy has joined the PPMD team as Senior Vice President of Legislation and Public Policy. Ms. Kennedy joins PPMD after being with the Muscular Dystrophy Association (MDA) for 25 years, first as a camp volunteer and as an employee for the last 16 years.

Ms. Furlong, who founded PPMD 20 years ago, has long admired Ms. Kennedy's work: "Annie and I have had an informal partnership as representatives of the muscular dystrophy community for many years. But to formalize what I consider an incredibly successful working relationship by bringing Annie into the PPMD family feels like kismet. Annie has been one of the muscular dystrophy community's strongest advocates since she was a teenager and she has dedicated her life to helping our children. Her talent and passion are boundless, and PPMD could not be luckier."

Ms. Kennedy has worked closely with PPMD's Advocacy team over the last decade, including collaborations on the MD-CARE Act and recent work to help get amendments to the bill passed this year. Ryan Fischer, Vice President of Advocacy and Community Outreach for PPMD is thrilled to have Ms. Kennedy joining the team: "We have seen incredible progress from government officials and regulatory agencies in Washington over the last few years. I believe that that is a result of an active community and productive collaboration with Annie and MDA. Bringing her experience with not only the Duchenne families, but muscular dystrophy families in general, will strengthen our advocacy agenda and help us continue this momentum. Strength happens together and Annie Kennedy will make us that much stronger."

Ms. Kennedy, who officially started working with PPMD on September 1, will focus on advancing public policy, addressing transition issues for people with Duchenne, and working on newborn screening issues. And while difficult to leave an organization that has played such a major role in Ms. Kennedy's life, both personally and professionally, she says the move to PPMD is full of possibility. "We are in an era of unprecedented opportunity. Robust therapeutic pipelines bring great challenges for clinical trial infrastructure and recruitment, trial design, approval pathways, and reimbursement justification. Therapeutic successes will yield urgent policy issues such as nationwide newborn screening, an insurance reimbursement framework for novel therapies, federal policies that promote autonomy and independence for new generations living decades into adulthood (and outliving their parents), an amplification of the teen/ adult community voice in policy and research matters, and more. The opportunities are endless. The priorities are extensive. The moment is now. I am honored and delighted by the opportunity to immerse myself fully into the Duchenne community and join Pat, Ryan, and the rest of PPMD's phenomenal team a team I have long admired and respected to pave our path forward and address these policy issues head on."

For more about Parent Project Muscular Dystrophy or to meet the PPMD staff, visit ParentProjectMD.org.

About Parent Project Muscular Dystrophy

Duchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophyour mission is to end Duchenne.

We invest deeply in treatments for this generation of young men affected by Duchenne and in research that will benefit future generations. We advocate in Washington, DC, and have secured hundreds of millions of dollars in funding. We demand optimal care, and we strengthen, unite and educate the global Duchenne community.

Everything we doand everything we have done since our founding in 1994helps boys with Duchenne live longer, stronger lives. We will not rest until every young man has a treatment to end Duchenne. Go to http://www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne.

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PPMD Welcomes Annie Kennedy as Senior Vice President of Legislation & Public Policy