I find this extremely encouraging -- does anyone have any ideas on how we can build on this in Pennsylvania? We need to take advantage of this timing for support from the state of Pennsyvania for our boys.
Rep. Thomas R. Caltagirone Makes Disease Awareness Priority After Meeting Local Boy
HARRISBURG, Pa., May 14 /PRNewswire-USNewswire/ -- The Pennsylvania House of Representatives has passed a resolution declaring the week of May 24, 2010 as "Duchenne Muscular Dystrophy Awareness Week" to help honor the work of Parent Project Muscular Dystrophy (PPMD), the largest non-profit organization in the United States focused on finding a cure for Duchenne muscular dystrophy (Duchenne). The resolution was drafted and presented by Representative Thomas R. Caltagirone (127th Legislative District, Berks County), who serves as Chairman of the House Judiciary Committee.
Chairman Caltagirone urged the Pennsylvania legislature to pass this resolution after meeting Fleetwood, Pennsylvania resident Aidan Sandor, a 10-year-old boy living with Duchenne. "In my job, I meet thousands of residents of this great state, and hear each of their compelling stories," says the Chairman, "but meeting Aidan and his family has forever changed my life. This young man is full of dreams and passion and energy, and deserves the same chances at happiness we all do. It is obvious to me that Duchenne is not going to keep him down. Therefore it is our obligation to educate ourselves about devastating diseases like Duchenne, so that we can help save the lives of our children and children's children. Aidan deserves the chance to fulfill every one of his dreams."
PPMD Founding President, Pat Furlong describes the news of the Pennsylvania resolution as "thrilling!" She says, "When you spend your life fighting a rare disease, you can imagine the number of obstacles you run up against. One of the toughest challenges we face in the Duchenne community is a lack of awareness. People just don't know what Duchenne is. But now, because of the efforts of Chairman Caltagirone and his colleagues in the Pennsylvania House of Representatives, Duchenne will spend a week in the spotlight. Pennsylvania has always been a special state to our community. We have held several international conferences in Philadelphia, and of course it is home to Children's Hospital of Philadelphia and University of Pennsylvania, two of the leading institutions in Duchenne research and treatment. We are forever grateful to the commitment of the Pennsylvania House of Representatives to help us in our fight to end Duchenne."
Duchenne muscular dystrophy is the most common, lethal, genetic illness of childhood. It is a progressive muscle disease that robs young men of the ability to walk, the ability to move their arms, and their independence. Duchenne is 100% fatal.
The Sandor family, along with other members of the Duchenne community, will be guests of the Chairman when the House convenes on May 24 and passes the resolution declaring the week of May 24, 2010 as "Duchenne Muscular Dystrophy Awareness Week," and will also recognize the Sandor family, especially Aidan.