Saturday, October 05, 2013
A worthwhile cause
I live in NJ with my wife and 3 kids. I'm a pretty passionate guy with various interests, Surfing, tech stuff, chess, running, finance, etc... . I work in clinical research coordinating clinical trials. Through investments in Biotech, I have come to learn about Duchenne Muscular Dystrophy (DMD). DMD is the most common lethal genetic disease of children worldwide and it is 100% fatal. Approx. 1 in every 3,500 boys worldwide is born with DMD; they die, on average, at about 19 years old.
I have two healthy boys (Dennis 3, Henry 5), 4 brothers, and multiple nephews. I have never taken health for granted but learning about DMD and the prevalence in males amplifies how grateful I have become. I decided this year to fund raise in a targeted tactical manner.
Before I started, it was important that I found a non profit organization that I could trust to properly distribute the funds raised. I also wanted to ensure that monies were directed directly to the boys who needed it most. I found that in the Jett Foundation.
Since 2001, the Jett Foundation, located in Kingston, MA, has worked to find treatments and a cure for Duchenne Muscular Dystrophy (DMD) while improving the lives of those affected by DMD. While multiple organizations exist that fund research, I wanted to fund the needs of the boys affected by DMD. As these boys enter teenage years, the items we take for granted have a huge impact on Quality of Life. Whether Smart Tablets or Van conversion, it was important to me the boys would be the sole beneficiary.
My goal was to raise, $51,000 from June 17th to October 17th and obviously I'm going to fall short. My plan was to help a young family in Ct convert a family fan so that the son could have the freedom of driving once he turned of age, with his wheelchair in the front seat. The back up plan is to provide tablets (iPads) for boys with DMD. Once confined to the wheel chair the tablet becomes a source for both education and entertainment, maybe even chess!
Any help, awareness, etc... would be much appreciated as every bit helps. Donating through the website ensures you receive a 501C3 organization if you choose to do so. Please help me reach my goal.
John Hall Fund for 51
PS: If you are strapped and can't donate a dime at least do me the solid and spread the word. I have learned how far it can go.