BOSTON, Feb. 21, 2019 (GLOBE NEWSWIRE) -- EB Research Partnership (EBRP), the largest nonprofit dedicated to funding research aimed at treating and ultimately curing Epidermolysis Bullosa (EB), is pleased to announce the 2nd Annual Plunge for Elodie event, taking place on March 2, 2019 in Wellesley, Massachusetts at 8:00 am, the Saturday following the global Rare Disease Day on February 28. Beginning in 2018 as a small hometown polar plunge, Plunge for Elodie has not only evolved into New England’s largest fundraiser for this devastating rare skin disease but also a nationwide event, making big waves for a little known cause.
Plunge for Elodie is organized by a group of ten childhood friends to honor Emily Kubik’s 2-year-old daughter Elodie, who suffers from EB. 100% of the proceeds benefit EBRP to advance innovative and life-saving treatments. This event launched in 2018 with a $15,000 fundraising goal. However, an unexpected outpouring of support swiftly changed that: $150,000 was raised, and the cause spread virally, all the way to Hollywood with actress Jessica Biel taking a virtual plunge for Elodie on social media. Her video was shared to her 7.4 million social followers and dubbed the Virtual Plunge for Elodie “The Next Ice Bucket Challenge”.
The 2019 Plunge for Elodie strives to keep the momentum going with a fundraising goal of $200,000 and an official Virtual Plunge campaign on social media happening the week prior to the event - from February 23-March 2, 2019 - to coincide with global Rare Disease Day.
“It’s so hard to get attention for rare diseases. 99.9% of people we communicate with about the event have never even heard of EB, but they are immediately touched and want to help. Whether they take the Plunge on March 2nd, share our posts on social media, or make a donation to the cause, we firmly believe that every ounce of support helps, no matter how small or large. It takes a village to generate awareness, and we are devoted to this event and to continuing to expand our reach and message,” said Plunge for Elodie Co-Chair Kristan Fletcher Khtikian.
A life-threatening genetic skin disease, it is estimated that 500,000 people worldwide have EB. Children with EB are called “Butterfly Children” because their skin is as fragile as the wings of a butterfly: they face severe pain, open wounds, and a grueling bandaging process on a daily basis. There is currently no treatment or cure for EB, however EBRP is dedicated to changing that as rapidly as possible.
“When we started EB Research Partnership in 2010, there were only 2 clinical trials in EB. Today, there are nearly 20. While that is tremendous progress in less than a decade, there are still no approved treatments. However, leading researchers believe that both a cure and life-changing treatments are within reach. Our bold and singular goal is to accomplish this by bringing together the greatest minds and resources in research, medicine, industry, philanthropy, and dedicated and passionate ambassadors of the patient community just like Plunge for Elodie,” said Michael Hund, Executive Director of EBRP.
Plunge for Elodie is open to the public with no registration fee. It is followed by a family breakfast event at the Wellesley College Club. This year, a same-day Satellite Plunge for Elodie will take place in Cleveland, Ohio, at Edgewater Park Beach, sponsored by Abeona Therapeutics, further boosting the goal of spreading EB awareness far and wide.
“We are moved by the support Plunge for Elodie continues to receive; it has come from so many places, including fellow EB families, former high school classmates, and complete strangers who hear our story. Coupled with the inspiring work EBRP is doing, we have hope that there will come a day when Elodie, and all those with EB, no longer have to suffer or feel pain,” said Elodie’s parents Emily and Dave Kubik, “That keeps us forging forward every day.”
Learn more at www.plungeforelodie.org
Contact:
EB Research Partnership
Michael Hund, +1-646-844-0902
mhund@ebresearch.org
About EB Research Partnership
Founded by a dedicated group of parents and 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. EB Research Partnership works to treat and cure EB as quickly and efficiently as possible and fulfills their mission by partnering with non-profit and for-profit organizations, foundations, individual donors, and the EB and research communities.
EB Research Partnership utilizes an innovative business model of venture philanthropy, when making a grant to a research project they retain the added upside of generating a recurring revenue stream if the therapy or product is commercially successful, then use the return on investment to fund additional EB research until a cure is found. To learn more about EB Research Partnership visit www.ebresearch.org.