BENEFITING: EB Research Partnership
ORGANIZER: EB Research Partnership
EVENT DATE: Mar 15, 2015
Earlier this year, I attended a fundraising event to raise funds for EB Research Partnership, a nonprofit organization committed to advancing treatments and finding a cure for children with EB. Knowing very little about this disorder, I began to research and I learned how painful it is to live each day with an incurable blistering disorder. No child should ever have to endure this devastating pain and live everyday with this burden, not understanding why it had to happen to them and why they cannot play outside or participate in numerous activities like other children. Daily tasks that so many take for granted require an immense amount of effort and strength. EB Research Partnership aims to find a cure so children with EB can live pain free and full lives.
I am fortunate enough to be a part of a team running the 2015 NYC half marathon to raise funds for EB Research Partnership. Completing a half marathon will be no easy task but I am welcoming and looking forward to training for this event. Please take a few minutes to watch the posted video of John Hudson Dilgen. His story is inspiring and I am honored to be running to support him and all children with EB.
Any donation is greatly appreciated and no donation is too small. Thank you so much for all your support.
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.