BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT DATE: Feb 19, 2016
I know this awesome family and they got this great nephew who has to live with a pretty awful disease called Recessive Dystrophic Epidermolysis Bullosa (EB). John Hudson Dilgen's EB causes his skin to be fragile, to blister and shear off easily. John Hudson's family and the work that they do to support him and help find a cure for EB is inspiring.
I decided to run a 10k in February to raise funds with Team EBRP. They fund the research that will find the cure for John Hudson's EB. Like my efforts with Team In Training and LLS - if we don't fund the research with fundraising NO ONE ELSE WILL. Not the government, not the hospitals, not the pharmaceutical companies. Family and friends will cure EB.
Here's a short video highlighting the reason why Team EBRP runs and the impact they have had. https://www.youtube.com/watch?v=qz0QeSCWif4
I have a birthday coming up. And instead of buying me a beer or cocktail please consider donating whatever you can to this fundraiser. I know I have asked you all recently to support LLS, and I am still working to raise money for them. But the reality is a harsh one. I am going to keep asking cause we need a cure and new treatments for EB and for cancer. This won't be the last time! We got work to do!
If you would buy me a beer throw $5 to this great organization. If you were going to buy me a cocktail donate $15. (You know how I like the good stuff.) Cheers!
Thanks for reading this and thanks for always supporting me.
EB Research Partnership wrote -
EB RESEARCH PARTNERSHIP
We are working to treat and cure EB as quickly and efficiently as possible. We fulfill our mission by partnering with non-profit and for-profit entities and individual donors, as well as with the EB and research communities.
We are the largest nonprofit dedicated to funding research aimed at treating and ultimately curing EB, a group of devastating and life-threatening genetic skin disorders that affect children from birth.
Leading researchers say treatments and a cure for EB are within reach—for Shane, Ryan, Jackson, Michael, Jennifer and every other person suffering from this horrific condition. Though we have made significant progress, we need much greater resources in our pursuit of a cure.
Partner with us in our mission to further life-saving research.