I've written before about Muscular Dystrophy , a term that refers to a 30 + progressive, genetic diseases that weaken the muscles and systems of the body. Muscular Dystrophy has been part of my life since I first volunteered at Sunshine Rotary Camp in 2003 - a camp for kids living with all forms of this disease. It's a place that I wrote about in my post, A Special Place for Special Kids and a place that brought incredible people into my life (a good example being Miss Mary). Not a day goes by when I don't think of the strength, courage and kindness these campers have. It guides me tremendously.
Jon Gardner (currently living with Duchenne
Muscular Dystrophy & John Ferrarone,
MDA camp 2005
These diseases affect some of the people I love most.
My aunt's brother Rob (one of my dearest pen pals and friends) lives with a form called Myotonic Muscular Dystrophy. He's a hero if I've ever known one, looking for the good in everything. Additionally, both of John's amazing sisters, Sara and Laura, have a form called Friedreich's Ataxia . Quite frankly, Muscular Dystrophy needs to take a long, permanent hike, so let's all give it a little push...
(living with Muscular Dystrophy)
& my aunt Rose
You may have heard of Pepsi Refresh , a fantastic project that funds "good ideas" by ordinary people. Pepsi chooses 1,000 ideas every month and it's up to the public to pick the winners. It's as simple as that! The grant categories are "Health", "Arts & Culture", Food & Shelter", The Planet". "Neighborhoods", "Education" and the grant amounts range from $5,000-$250,000.
One of the ideas selected this month was submitted by the Jett Foundation requesting $250,000 in grant money to fund one year of research for Duchenne Muscular Dystrophy (DMD). Currently there is no cure for DMD, the most common and severe form of Muscular Dystrophy and the leading fatal genetic disorder of children. Sadly, the life expectancy of individuals living with DMD ranges only from late teens to mid-30s. Just think what $250,000 could do in working toward a treatment and cure for this disease and other forms of Muscular Dystrophy!
Me & the wonderful Eric Grammas
(passed away at age 24 from Duchenne Muscular Dystrophy), camp 2003
Currently, the Jett Foundation's project is ranked 19th and needs to come in the top 2 to receive the money. You can help. Just click here , vote to fund this project every day and as much as you can before July 31st, and please pass it on! Thanks so much everyone.