RIDE FOR A CURE
Epidermolysis Bullosa (EB) is a life-threatening genetic disorder that affects the skin. Children born with EB lack critical proteins which normally bind the layers of our skin together. Without these proteins, even slight pressure on the skin can cause wounds and blistering. Damage to the skin can be both external and internal and causes extreme and prolonged pain and a range of associated health problems. The high mortality rate caused by EB means that most sufferers are children and young people.
EB still has no cure. The young people born with the disease battle bravely with a level of pain and disability that baffle the mind. However, research is underway to find ways to lessen the pain of EB and ultimately to find a cure.
Please, if you do nothing else today, take the time to watch the two videos below to better understand the nature of this appalling disease.
- Richard Parnell
Join Me:
My name is Richard Parnell. I was born in Sussex, England, and I now live in Vermont with my wife, my 9-year-old son, and 2 cats. I’ll be turning 60 this year. I discovered the video about John Hudson Dilgen (above) completely by accident, and the grace, courage, and generosity of spirit of this remarkable young man has inspired me to try to help raise funds for the EB Research Partnership (EBRP). The way I am choosing to do this is through a long, unsupported bicycle ride, beginning at the New York Harbour, and heading west. I'm unsure how far I can get in the few weeks available to me, but your support will be essential.
If John Hudson’s story has spoken to you in any way, please, please help EBRP to find a cure for him and the thousands like him around the world. Every dollar you donate through the link below goes directly to EBRP, and will in the process help to push me further across the country, and keep my spirits up. I would love nothing more than to raise a huge amount for this life-saving research. For children and young people with EB, time is of the essence. We need to cure this horrific disease now, to give them the future they so richly deserve, and prevent future generations from having to go through the ordeal of EB.
EB Research Partnership (EBRP) is the largest global organization dedicated to finding a cure. EBRP ensures sustainable funding for future EB research through an innovative Venture Philanthropy Model. Instead of simply making grants, EBRP searches the globe to strengthen and accelerate the most promising research projects. These projects are vetted through EBRP’s world-class Scientific Advisory Board. In exchange for funding, EBRP takes a financial interest in the work of research institutions. When those projects succeed, the returns are reinvested back into other promising EB research initiatives that are also scalable across thousands of other rare diseases.
Every dollar donated to EBRP is multiplied — potentially many times over.