Parent Project Muscular Dystrophy

Description

Parent Project Muscular Dystrophy is a not-for-profit organization founded in 1994 by parents of children with Duchenne and Becker Muscular Dystrophy. Today, our work focuses in 5 areas: ·We identify, fund and disseminate information about promising Duchenne and Becker MD research and its applications. Directed by Scientific Advisor Dr. Lee Sweeney, this includes funding high-impact research that may benefit this generation of boys, tracking current and planned research, and more. ·We seek to ensure that all families, caregivers, health care professionals and others have access to state-of-the-art information about treatment and care options for children with Duchenne and Becker MD. We hold the only annual international conference on Duchenne and Becker MD (held each summer), frequently update our comprehensive web site (www.parentprojectmd.org), publish regular newsletters, and use other communications vehicles to share information that may be of benefit. ·We seek to ensure that health and human services policy makers afford the same priority to Duchenne and Becker MD as other disorders of similar incidence and prevalence. Our active grassroots network has been actively lobbying for years. Our efforts resulted in the passage of the MD CARE Act in 2001; the first piece of legislation specifically addressing childhood Muscular Dystrophies. ·We seek to ensure that the voices of people with and affected by Duchenne and Becker MD are heard. Children afflicted with these disorders have a unique and valuable perspective. We provide opportunities for them to express their feelings and connect with others via our web site and, increasingly, at our annual conference. ·We seek to collaborate with other international organizations addressing Duchenne and Becker MD. Children all over the world have Duchenne and Becker MD. Doctors and scientists are researching and treating all over the world. We build connections with related organizations to ensure that significant research and care findings are shared quickly.