Parent Project Muscular Dystrophy Holds 15th Annual Connect Conference In Atlanta
Researchers, scientists, and Duchenne experts from around the world travel to the Connect Conference every year to share with families the latest in muscular dystrophy research and care. 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.
Ms. Furlong is excited that PPMD's 15th anniversary will be marked in Atlanta, with what promises to be the most comprehensive and informative conference the organization has held to date. But the anniversary is bittersweet. "When we formed Parent Project Muscular Dystrophy fifteen years ago - a group of parents and grandparents frustrated by the lack of research and funds devoted to Duchenne muscular dystrophy - we hoped that we wouldn't still be around in 2009. That a cure would have been found and our desperate fight to save the lives of our sons would have ended. That this monster that had invaded our homes and our families would have been defeated. Duchenne has not been cured, but the research that is happening is incredible and the people dedicated to end Duchenne are the most passionate and determined people you could hope to have working for your child's health."
Ms. Furlong is especially proud of the reputation the Connect Conference has established over its 15 year history. "Families attend the Connect Conference, the largest international event dedicated entirely to Duchenne, because of the robust agenda and acclaimed presenters. We present state-of-the-art research, including updates on PPMD's drug discovery program Project Catalyst and the End Duchenne Grant Award Program, a program to ensure promising Duchenne research reaches translation to human studies. Experts come to debate issues surrounding optimal care, and parents reap the benefits of these discussions. PPMD's goal has always been to provide the Duchenne community with a comprehensive approach in the fight against Duchenne - funding research, promoting advocacy, broadening treatment options, and as reflected the last 15 years with the Connect Conference, uniting the community. Only this comprehensive approach will lead to the day that 100% of those diagnosed can turn to a treatment to end Duchenne."
United States Senator Johnny Isakson (R-GA), has been a Member of Congress since 1999, serving three terms in the House of Representatives before being elected to the Senate in 2004. He has helped advocate for funding for muscular dystrophy research for years. When notified of the "Change It Champion" award he will receive, Senator Isakson said, "I have devoted my life to serving the State of Georgia and our great nation. I am humbled by this award and PPMD's recognition of my work in muscular dystrophy. But we still need additional research and we still need a cure. And I will not stop working for this cause until that day comes."
PPMD is also recognizing the American Football Coaches Association for its commitment to Coach to Cure MD, a one-day, nationwide event with PPMD designed to raise awareness about Duchenne. AFCA member coaches around the country will wear armbands again this year in an effort to create media interest and public understanding of Duchenne. Last year, the AFCA helped to raise over $270,000 for Duchenne research. Says Executive Director of the AFCA, Coach Grant Teaff, "Every football coach has one thing in common - a commitment to young men. This charity partnership is a great way to show the world the great core values of our profession, and help find a cure for these young men."
Darius Weems and Logan Smalley will receive a "Change It Champion" award for their work on the critically acclaimed documentary "Darius Goes West." The film chronicles 15-year-old Darius, who lives with Duchenne, and eleven of his best friends as they set off across America with the ultimate goal of getting his wheelchair customized on MTV's Pimp My Ride. More than just entertaining or even an awareness piece about Duchenne, the film has been hailed for the attention it brings to accessibility issues in our country. Additionally, Mr. Weems and Mr. Smalley decided to sell the DVD of the film themselves so that a majority of the proceeds of each copy sold will go towards Duchenne research. Their goal is to sell one million copies in one year.
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.
Source: Parent Project Muscular Dystrophy
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