Marie DiPalma's Fundraiser
View Marie's Team
My Appeal
Please help us celebrate Thomas's 7th birthday on August 16th by participating in the virtual EB Research Partnership Take Flight 5K and Fun Run. We couldn't think of a more perfect way to celebrate his big day! It's been almost 6 years since we embarked on our journey with EB and we are amazed at how much Thomas pushes himself despite his pain. His determination and smile keep us all focused on developing cure!
Thank you to our incredible family and friends for their constant love, support and generosity! Love, Jared & Marie
My Progress
Marie is running 7 miles and raising funds for EB Research Partnership. Please show your support and donate generously.
141.6 MILES done
7 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.
Recent Donations
NW
$ 50
CE
$ 115
Happy Birthday Thomas!!
A
$ 50
Happy Birthday to Thomas!
JD
$ 100
Love you, Thomas! Grammy and Gramps!
A
$ 25
Hi Marie! Good luck with your fundraiser! I donated another amount earlier to use up what was left of a debit card, so I’m making an additional donation now to bring the total up to what I’d like to give you.
A
$ 25
MW
$ 100
DA
$ 50
Birthday wishes Thomas! May all your dreams come true!
MD