CureDuchenne To Host Inaugural Duchenne Muscular Dystrophy Summit
Orange County Non-Profit Brings Together Top Scientists and Researchers to Find a Cure for Devastating Childhood Disease
CORONA DEL MAR, Calif. – March 8, 2010 – Today, CureDuchenne, a nonprofit dedicated to raising funds and awareness for Duchenne Muscular Dystrophy (DMD), announced that on March 19,, 2010 the organization’s scientific advisors from around the country will come together in the fight to find a cure for Duchenne Muscular Dystrophy.
The group of ten includes world-class scientists coming together for the chance to sit with each other and share new strategies around finding a cure for DMD, a disease that is the leading genetic killer of children, affecting more than 20,000 boys in the US.
“We know that the path to a cure starts with collaboration,” said CureDuchenne co-founder Debra Miller. “By bringing together ten of the world’s most forward thinking scientists, researchers and drug development experts in the field of DMD research we hope to be able to best identify the strategy necessary to move treatment options into the human clinical trial stage. We’re racing the clock to save our boys and if there ever was a group capable of finding a cure, it’s this one.”
The inaugural DMD Summit will include these muscle disease and drug development experts::
- Barry Byrne, MD, PhD, University of Florida
- Jeffrey Chamberlain, PhD, University of Washington
- Kevin Campbell, PhD, University of Iowa
- Eric Hoffman, PhD, George Washington University School of Medicine
- Edward Kaye, MD, Genzyme
- Douglas Macdonald, PhD, CHDI Foundation, Inc.
- Carrie Miceli, PhD, UCLA
- Stanley Nelson, MD, UCLA
- Pier Lorenzo Puri, MD, PhD, The Burnham Institute
- Brian Tseng, MD, PhD, Harvard University and Massachusetts General Hospital
This group of scientists serves as CureDuchenne’s scientific advisory board and works with the organization to determine what projects around the world are closest to the human clinical trial phase and the most viable for funding. To date, CureDuchenne has provided millions of dollars in funding for DMD research around the world and has been integral in bringing 3 treatment options to the human clinical trial phase.
The DMD Summit will take place over the course of three days and will include closed session discussions, research project evaluation and a breakfast event where each participant will report on the findings from the weekend. The breakfast will be attended by DMD parents, advocates and supporters.
Schedule of Events
Thursday, March 18: Scientists arrive in California and immediately head into a closed session
Friday, March 19: Scientists evaluate research projects and provide research project recommendations to CureDuchenne team
Saturday, March 20: Scientists address parents and advocates at DMD Summit closing and parent breakfast
**Photo and interview opportunity for media**
Founded in 2003 by Debra and Paul Miller following the devastating diagnosis of their son at age five, CureDuchenne is a nonprofit organization that raises awareness and funds, specifically aimed at finding a cure for DMD. As the leading genetic killer of young boys, this devastating disease affects more than 1 in 3,500 boys worldwide and is the most common and lethal form of Muscular Dystrophy.
Boys with Duchenne are usually diagnosed by the age of five, in a wheelchair by age 12, and may be completely paralyzed by their late teens. Historically, most patients with DMD do not live to see adulthood. Duchenne can occur in any family, from any race, and from any background.
For more information about CureDuchenne please visit www.cureduchenne.org.
About CureDuchenne
CureDuchenne is a nonprofit organization that raises awareness and funds specifically aimed at taking on Duchenne Muscular Dystrophy (DMD). By working closely with the world’s leading DMD scientists CureDuchenne works to determine the most viable research projects that will accelerate the clinical trial process and bring potential life saving drugs to help this generation of young boys living with the deadly disease.
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