Furlong Will Address Role of Advocacy in Facilitating Basic Scientific Research
HACKENSACK, N.J., Dec. 3, 2012 /PRNewswire-USNewswire/ -- Parent Project Muscular Dystrophy (PPMD) founding president and CEO Pat Furlong, has been invited to speak today at the Institute of Medicine's (IOM) Roundtable on Translating Genomic-Based Research for Health. IOM is holding a public workshop today in Irvine, CA titled "Improving the Efficiency and Effectiveness of Genomic Science Translation."
Pat is a member of IOM's Committee on Pediatric Studies and is thrilled to be participating in the discussion "The Role of Advocacy in Facilitating Basic Scientific Research" at this important roundtable. "Advocacy has never played a more important role in the fight to cure rare disease, than it does today. As a patient advocacy group, it is critical for our voices to be heard in Washington. This is what IOM stands for and why they were created. To help amplify voices like PPMD's. They also understand that it takes creativity, thinking outside of the box, to reach the ears of the federal government and I am humbled that they have chosen me to participate in this discussion. PPMD has done and continues to do everything it can to end Duchenne muscular dystrophy. And our history advocating in Washington has shown us that it will take more than just a miracle drug or treatment. It will take the support of our nation's leaders."
Adam C. Berger, Ph.D., the Senior Program Officer and Director for the Roundtable and a member of the board on Health Sciences Policy believes that this meeting is an important next step for the rare disease community and is excited to have Pat joining the discussion. "This meeting of the IOM Roundtable is an important vehicle for raising awareness and spurring discussion among decision-makers regarding the need to enable more efficient and effective translation of basic scientific discoveries and having leaders such as Pat participate ensures that the voices of the patient community are not only part of the discussion but also the necessary solutions."
To learn more about Parent Project Muscular Dystrophy and Pat Furlong, please visit ParentProjectMD.org/MeetPat.
About Duchenne muscular dystrophy
Duchenne, the most common form of childhood muscular dystrophy, is a progressive and fatal muscle disorder affecting boys and young men that causes the loss of muscle function, wheelchair dependency and a decline in respiratory and cardiac function.
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs young men of their muscle strength. Parent Project Muscular Dystrophy is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne muscular dystrophy—our 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 do—and everything we have done since our founding in 1994—helps boys with Duchenne live longer, stronger lives. We will not rest until every young man has a treatment to end Duchenne. Go to www.ParentProjectMD.org for more information or to learn how you can support our efforts and help families affected by Duchenne.
SOURCE Parent Project Muscular Dystrophy