Parent Project Muscular Dystrophy Announces 2008 Annual CONNECT Conference
Parent Project Muscular Dystrophy (PPMD), the largest non-profit organization in the United States focused on finding a cure for Duchenne muscular dystrophy (Duchenne), will host its 14th annual CONNECT conference in Philadelphia, PA on July 17-20, 2008. The CONNECT conference brings together patients, scientists, physicians and advocates to share the latest research on Duchenne, the most common form of childhood muscular dystrophy. Duchenne 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.
“Every year, the CONNECT Conference provides Duchenne patients and their families a forum in which they can access the latest scientific research, share their experiences and interact one-on-one with the top physicians in the field,” said Pat Furlong, president and CEO of PPMD. “Our goal at PPMD is to end Duchenne by funding research, raising awareness, promoting advocacy, connecting the community and broadening treatment options for patients. This conference is an important weapon in this fight.”
From July 17 – 20, the CONNECT conference will feature presentations on cutting-edge Duchenne research as well as current patient care and treatments options. Complete session information can be found at http://www.parentprojectmd.org/Agenda.
Friday, July 18 (6:30 am): Rocky Run
More than 150 individuals from all walks of life will join together in their goal to find a cure for Duchenne for the Run for Our Sons Marathon, “Rocky Run 2,” a 3-mile roundtrip race up the Philadelphia Art Museum steps that Rocky Balboa made famous. The event will begin at the Loews Philadelphia Hotel at 12th and Market Streets.
Saturday, July 19 (8:30 pm): End Duchenne Prize (Loews Philadelphia Hotel)
In cooperation with the National Institutes of Health (NIH), PPMD will announce the first-ever “End Duchenne Prize” – a one-year, $1 million grant awarded to a scientist working to advance translational research in Duchenne. Because the NIH is currently only able to fund grants scoring in the top 10th percentile, they are inviting investigators of high-scoring applications who did not receive NIH funding to release their applications and score sheets to PPMD for evaluation. PPMD’s Medical and Scientific Advisory Board will review these applications and identify the winner. Importantly, this innovative approach marks one of the first times a non-profit has worked directly with the NIH to supplement their grant funding efforts.
Please note: in an effort to respect the privacy of the patients and families attending the conference, cameras are not allowed inside the convention center. If you are a member of the media and are interested in photographing a segment of the conference, please contact Jessica Searcy (803-325-2104) in advance of the meeting.
Duchenne is the most common fatal genetic disorder diagnosed during childhood. Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures. Boys and young men with Duchenne lack dystrophin, a protein critical to the structural stability of muscle fibers. Patients develop progressive muscle weakness that eventually causes loss of mobility, wheelchair dependency and a decline in respiratory and cardiac function. Currently, there is no cure for Duchenne and limited therapeutic options exist.
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 www.parentprojectmd.org.