We just found out of a huge danger to DMD kids that we were previously unaware. A Fat Embolism is when fat from inside the bone is released into the bloodstream following a break. These embolisms…Continue
Fred i apologize if you felt i was trying to take over your discussion that was not my goal. I simply was trying to inform as many people as possible. I understand your feeling that a petition in and of itself can be completely useless. In most cases i agree with you. However in this case i want to just tell you. The Obama administration created a way to petition the Whitehouse. According to Whitehouse.gov if a petition reaches 100,000 signatures they have committed themselves to responding. So i dont believe they will respond with a "no." Again i apologize but if you haven't please check the petition out don't dismiss it because of my actions.
I have Duchenne gentlemen. Check the DuchenneConnect registry. Richard Darienzo look it up. Im 35 years old im living on borrowed time. It isn't my petition it was created by Charley's Fund and it is all our petition. Haven't you heard of exon skipping and the drug Eteplirsen made by Sarepta. Your sons could be taking it now and delaying loosing there childhood. The FDA is delaying approval by at least two years. This despite the advice by Dr Louis Kunkel who discovered dystrophin. I remember when dystrophin was discovered in 1987. I remember promises of gene-therapy. You ever think when you were 12 "mabe ill be cured by 17 so i can play baseball" So that isn't spam that is another weapon to get a treatment started and start saving lives. So ill "spam" wherever i want. This is the most critical issue of the moment