Elongate Donates $150K to EB Research Partnership’s #CryptoForCures
Elongate, a charity-focused cryptocurrency token, donated $150,000 to the EB Research Partnership (EBRP) #CryptoForCures Fund, which seeks to advance research to cure epidermolysis bullosa (EB) and other rare diseases.
With a goal of curing EB by 2030, EBRP hopes to raise $1 million by the end of the year to fund cutting-edge research technologies like gene-editing and stem cell therapies. The inaugural donation established Elongate as the founding member of the fund. Learn more about cryptocurrency donations here.
“As an organization that celebrates innovation, we are so grateful for this generous gift from Elongate as the Founding Member of the #CryptoForCures Fund to put speed into advancing breakthroughs for patients and families battling EB, in the process partnering to pioneer a model to impact the greater rare disease community,” Michael Hund, CEO of EBRP, said in a press release.
ERBP is the largest international nonprofit organization funding EB research. Founded in 2010 by Jamie and Alex Silver, and Heather and Ryan Fullmer — parents to children with EB — along with Pearl Jam’s Eddie Vedder and his wife Jill, the organization has raised more than $40 million for research and funded 94 projects.
“We have made it our mission to support the brilliant research focused on finding a cure for EB that will give Jackson, and others afflicted with EB, a chance at living pain-free lives,” the Silvers wrote on EBRP’s website.
Following a sustainable venture philanthropy model, EBRP funds research partners while retaining financial interests so that when therapies are commercialized, the nonprofit can re-invest the earnings to further advance EB research. This model also is being used to advance clinical research for other rare diseases.
In the decade since the organization was established, clinical trials of EB treatments have increased from only two in 2010 to more than 30 in 2020, including four Phase 3 clinical trials.
“Elongate aims to leverage the power of cryptocurrency for the greater good. We are proud to support EB Research Partnership’s mission to discover treatments and cures for this devastating medical condition,” said Alexander Gambon, chief storytelling officer of Elongate.
EB is a group of rare skin disorders that cause blistering of the skin as well as internal blistering. Current treatment options are limited to managing symptoms, like pain and inflammation, and minimizing complications, such as infections. Hope for better EB treatments and a cure keep EBRP’s founders motivated.
“Our dream is to see him experience simple freedoms without consequences,” the Fullmers wrote of their son, Mikey. “With your help, we will find a cure.”