The money is going to Ehlers-Danlos Syndrome Network C.A.R.E.S. Inc. which is a non-profit organization ran only by volunteers to help fund research to find a cure or treatment for EDS. What this means is all donations and all money they make goes directly towards a cure and nothing else, which is great! If they keep getting enough funding, Dr. Hal Dietz at John Hopkins will find a cure or at least an effective treatment within 5 years. If not, it will take much longer.
Ehlers-Danlos Syndrome is a genetically inherited connective-tissue disorder that affects all body systems and can be extremely painful and debilitating for those who have it. Just a few of the many symptoms of this disorder include extreme joint looseness leading to repeat dislocations of various joints, stretchy or fragile skin that easily tears, cardiac effects, osteoarthritis, and among the most fatal are fragile blood vessels causing aneurysm. There are up to 7 types of this disorder however many folks have symptoms from multiple types. Some people will have minor issues that do not affect them and they may never know they have it, while others die from this disorder due to aneurysm or other complications relating to EDS. Children suffer the most from this disorder and many are so fragile that they pass away at a young age due to ruptures. The average life expectancy of someone with the most severe types is 40 years of age, however some children will not live past the age of 14.
EDSNC has been fighting for more funding to find a cure within the next 5 years. In the meantime, children and young adults will pass away from this terrible disorder. People who don’t know they have it will pass away or suffer needlessly. Please help spread awareness so that a cure can be found and these deaths and suffering can be prevented.
The FB page is: http://www.facebook.com/#!/pages/EDS-Network-CARES/295238396730
The link to donate online directly to the research fund is (this can be found on the EDSNC website, but it’s a little confusing to get there so here is is): https://www.paypal.com/us/cgi-bin/webscr?cmd=_flow&SESSION=GOMvZw6s9-kYdqlOpzEzqQF_sEHfdA0S-LrHjvhYHP7LLEh_GcevPBm_bF0&dispatch=5885d80a13c0db1f8e263663d3faee8dc60d77e6184470d51976060a4ab6ee74184470d51976060a4ab6ee74