The Organization

The Organization

Our Mission

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.

Our Model: Venture Philanthropy

Your generous donation has the ability to fund multiples of its original value in research for years to come. EBRP takes concepts from venture capital investing and applies them towards achieving philanthropic goals.

When we make a traditional donation to a research project, we retain the added upside of generating a recurring donation stream if the therapy or product is commercially successful. We then use this revenue to fund additional EB research.

Historically, non-profits have passed these financial benefits to universities and commercial companies but EBRP participates in them to make philanthropy more sustainable. EBRP is proud to have partnered with the University of Minnesota and Stanford University in pioneering this model.

The Organization

Three Families Partner Together

EB Research Partnership grew out of a collaboration between two organizations—the Jackson Gabriel Silver Foundation (JGSF) and Heal EB. These organizations were started by two families on separate coasts that shared a singular goal—to find a cure for their sons, Jackson Silver and Michael Fullmer, respectively, and all other children and adults that suffer from EB. Both organizations believed that partnership is the key to a cure, so in 2014 they banded together. Close friends Jill and Eddie Vedder, the lead singer of Pearl Jam, are co-founders of the combined EB Research Partnership.

Partner with us in our mission to drive research forward.

The Organization

EBRP Funds Cutting-Edge Research

With the community’s support, EB Research Partnership has been aggressively and efficiently funding research since 2010. To date, we have raised over $10.5 million for research grants and been instrumental in securing an additional $35 million for critical EB research. EBRP has given grants to support the cutting-edge work at institutions such as the University of Minnesota, Stanford University, and the University of Southern California. EBRP helped to create and continues to support research enabling infrastructure to ensure that treatments will get to those in need as swiftly as possible.

The Organization

Jill & Eddie Vedder on Healing EB

"We are thrilled to be able to support the brilliant work of leading doctors and researchers committed to identifying better treatments and ultimately a cure for this cruel disease. Our close family friends have a son with EB and we want to do everything we can to ensure a better quality of life for him and all children living with those types of genetic disorders."

In partnership with Microsoft, Jill and Eddie Vedder were instrumental in creating the "Heal EB: Cause the Wave" campaign to raise $5 million for EB research.

Board of Directors

Alexander Silver

Alexander Silver

Alexander Silver is co-founder, executive chairman, CEO and executive board member of the EB Research Partnership (EBRP) the largest national organization dedicated to funding EB research. He is a co-founding partner at P2 Capital Partners, a private investment firm based in New York City. Alex has over 15 years of investing and advisory experience and has held positions at global investment and advisory firms including Soros Fund Management, Karsch Capital Management and Lazard Freres.

Alex has been the key architect of the EB Research Partnership and the venture philanthropy funding strategy to accelerate scientific breakthroughs, move treatments towards the clinic and ultimately find a cure for EB. He also has strong ties in the EB research scientific community, has testified in front of Congress, and serves on the NAIMS Advisory Council of the National Institutes of Health. Together with his wife, Jamie, he has raised over $3 million for EB research prior to founding the EB Research Partnership. Alex has a 8-year-old son, Jackson, with RDEB, and daughters Michaela and Charley.

He received a Master’s in Business Administration from Harvard University and a Bachelor’s of Arts in Political Science from Brown University where he graduated magna cum laude and was elected to Phi Beta Kappa.

    Board of Directors

  • Jeffrey Berger Washington D.C.
  • Mark Bomback Chappaqua, NY
  • Chad Ceretto Irvine, CA
  • Eleanor Dehoney Washington, DC
  • Ari Deshe Miami, FL
  • Daniel Deshe Miami, FL
  • Faye Dilgen Staten Island NY
  • Richard Grossmann New York, NY
  • Matthew Holmes New York, NY
  • Eddie Jarvis Kannapolis, NC
  • Michael Kahn Armonk, NY
  • Jennifer Kauf New York, NY
  • Kate Lee New York, NY
  • Abbie Levine New York, NY
  • Elizabeth Morano Staten Island, NY
  • Joshua Paulson New York, NY
  • Giacomo Picco New York, NY
  • Margaret Silver Briarcliff, NY
  • Monique Sock New York, NY
  • Rob Veres Los Gatos, CA

Our Partners

We couldn’t do what we do without our partners. We’re super thankful for everything they bring to the table in our joint fight against EB.

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