Joseph Snowney's Fundraiser
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My Appeal
During the COVID-19 Pandemic it has been a challenging time for the world. However, EBRP’s mission has not stopped and we must continue to make advancements in research for a cure. This means pivoting our strategies and taking our events virtual. The Take Flight 5K and Fun Run is the perfect representation of EBRP’s resilience during this time.
The funds raised from the Take Flight 5K and Fun run will go toward funding research to cure Epidermolysis Bullosa.
My Progress
Joseph is running 3 miles and raising funds for EB Research Partnership. Please show your support and donate generously.
199.4 MILES done
3 miles
My Cause
The Mission: EB Research Partnership is the largest nonprofit funding research aimed at treating and ultimately curing Epidermolysis Bullosa, a group of devastating and life-threatening skin disorders that affect children from birth. EBRP works to treat and cure EB as quickly and efficiently as possible, fulfilling our mission through partnerships with non-profit and for-profit organizations, foundations, individual donors, and the EB and research communities. Leading researchers say treatments and a cure for EB are within reach. Though we have made significant progress, we need much greater resources in our pursuit of a cure.
About the Organization:
Founded in 2010 by a group of dedicated parents along with Jill and Ed Vedder (Pearl Jam), EB Research Partnership (EBRP) is the largest 501(c)(3) nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB), a group of devastating and life-threatening skin disorders that affect children from birth.
EBRP utilizes an innovative business model of venture philanthropy. When making a grant to a research project we retain the added upside of generating an additional revenue stream if the therapy or product is commercially successful, and use the return on investment to fund additional EB research.
EBRP is committed to the highest financial responsibility, directing nearly 90% of revenue to research and related programming and achieving the highest rating of the Platinum Seal of Transparency from GuideStar.
By partnering with us, the Hearst Foundation will greatly further our mission to develop life-saving treatments for EB and be part of the team that will cure a diabolical disease.
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♥️♥️♥️
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I love you!
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Just a skosh towards a good cause
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Anything for the fam
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Xoxoxo ❤️
JS