Parent Project Muscular Dystrophy Welcomes Sharon Hesterlee, Ph.D. and Holly Peay, M.S.

Jan 05, 2010, 12:00 ET from Parent Project Muscular Dystrophy

New Additions to Organization Will Focus on Research, Advocacy, and Outreach

MIDDLETOWN, Ohio, Jan. 5 /PRNewswire-USNewswire/ -- Patricia A. Furlong, Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), the largest non-profit organization in the United States focused on finding a cure for Duchenne muscular dystrophy (Duchenne), announced today that Sharon Hesterlee, Ph.D. and Holly Peay, MS, CGC, will be joining the PPMD staff. Dr. Hesterlee joins PPMD as Senior Director of Research and Advocacy after working for ten years with the Muscular Dystrophy Association (MDA), where she served most recently as Senior Vice President of MDA Venture Philanthropy. Ms. Peay will be Senior Director of Outreach and Education and brings extensive experience as a genetic counselor and educator to PPMD.

Ms. Furlong is thrilled with the addition of Dr. Hesterlee and Ms. Peay to PPMD, "As we face the beginning of a new year, a new decade, there is so much promise in Duchenne muscular dystrophy research. PPMD has never felt more confident in what tomorrow holds, especially now that we are welcoming such amazing new teammates, Sharon Hesterlee and Holly Peay. We are so proud of what our organization has accomplished in 15 years and we feel that the addition of Sharon and Holly to the PPMD family will help us begin a new chapter in our community's history and bring us one step closer to ending this disease."

While at the MDA, Dr. Hesterlee and PPMD worked closely over the last several years on projects including the MD-CARE Act, the first major piece of legislation focused on funding muscular dystrophy research, and the formation of the Duchenne Research Collaborative International (DRCI), a historic coalition of the world's leading muscular dystrophy organizations.

Ms. Furlong continues, "Sharon brings with her not only expertise in the field of neuromuscular disease and experience brokering partnerships with industry, but she brings with her a passion for fighting - fighting for the best treatments, fighting to find a cure, fighting to end Duchenne. Sharon could have gone to any organization, working with any neuromuscular disease. The fact that someone of her talent and intelligence wanted to work with PPMD is humbling and reinforces the Duchenne community's belief in what we are doing."

Dr. Hesterlee looks forward to joining the PPMD and is ready for the unique challenges of working with a smaller, grassroots organization. "PPMD has an excellent portfolio of well-structured programs and is very professionally run. At the same time, it's managed to retain its sense of mission and of the urgency of that mission. If PPMD were a person, I'd say it's a person with its 'head on straight.' I'm also impressed by how much PPMD manages to accomplish with its relatively small budget and am excited to be joining this team."

When asked what she thinks she can bring to PPMD, Dr. Hesterlee answered, "I think the biggest challenge we face with Duchenne is the small market. At the end of the day, to get someone to put up the $400-$800 million it takes to get a new drug approved you need to have a financial incentive. That means that anything PPMD can do to help lower the financial barriers for getting new drugs into clinical testing will help overcome this small market problem. We need to attract big biotechnology and pharmaceutical companies in spite of the small market, and there are ways we can do this. The other related challenge is the different pockets of funding activity going on in Duchenne that are not always focused in the same direction. The more we can focus the resources of the whole community of people interested in solving this problem, the more effective we will be. That's something that I hope I can help address."

Dr. Hesterlee continues, "I would also love to see PPMD develop a vigorous venture philanthropy program, building on the very productive work started with its Project Catalyst program. We need to expand the donor base to fund more projects, while being careful not to stray from the organization's grassroots approach, which has made it so successful."

PPMD also welcomes Holly Peay, MS, CGC, an experienced genetic counselor and educator who worked with the organization in developing and launching DuchenneConnect. DuchenneConnect is a central online arena linking the resources and needs of the Duchenne and Becker muscular dystrophy community (those living with muscular dystrophy, their families, and caregivers) and the provider community (clinical care providers, policymakers, industry professionals, and the medical research fields).

"We loved working with Holly on DuchenneConnect and were so impressed with her compassion for the journey our families have been forced on when they receive a Duchenne diagnosis," says Ms. Furlong. She continues, "Holly is more than just a skilled genetic counselor, she also strives to educate healthcare providers so that a Duchenne diagnosis can happen as early as possible and an effective treatment plan can begin. Holly is the perfect combination of knowledge, experience, and heart that we look for when we bring new experts to our organization."

Ms. Peay comes to PPMD with lots of ideas and goals for herself and the organization. "I would like to improve clinicians' ability to identify early signs of Duchenne, as well as ensure that there is appropriate follow up and referrals. I would like to strengthen PPMD's relationships with clinician organizations, helping to raise awareness and continue to make sure Duchenne is on the radar of the medical community. I am also looking forward to building upon PPMD's strong history of developing quality educational materials for individuals with Duchenne and their families."

She says the decision to join the PPMD was an easy one because, "PPMD is an organization that successfully manages to maintain a focus on the immediate emotional and practical needs of families, while also pushing forward research. They play a vital role in giving families more to hope for in the care of their children, while helping families maintain reasonable expectations and live each day to the fullest. I wanted to be a part of these efforts!"

Both Dr. Hesterlee and Ms. Peay will officially be on staff as of the beginning of 2010.

About Duchenne Muscular Dystrophy

Duchenne muscular dystrophy is the most common, lethal, genetic illness of childhood. It is a progressive muscle disease that robs young men of the ability to walk, the ability move their arms, and their independence. Duchenne is 100% fatal.

About PPMD

Parent Project Muscular Dystrophy (PPMD) is a national not-for-profit organization founded in 1994 by parents of children with Duchenne and Becker muscular dystrophy. The organization's mission is to improve the treatment, quality of life and long-term outlook for all individuals affected by Duchenne muscular dystrophy through research, advocacy, education and compassion. PPMD is headquartered in Middletown, Ohio with offices in Fort Lee, New Jersey. For more information, visit

SOURCE Parent Project Muscular Dystrophy