The EBMRF is always in need of volunteers at our events. If you would like to get involved in helping us, please contact us. Here are other ways you can be a Friend of EB:
There are lots of different ways you can shop to support EB. We make it easy with our Amazon Smile program, as well as our line of other products that benefit The EBMRF. Start shopping in support of EB!
Support Groups are set up in New York, Los Angeles, Pennsylvania, New Jersey, and other cities. They provide a forum for sharing experiences and support among members, provide access to local medical professionals and provide a way to stay informed of studies, research and progress. Chapters can help raise funds by coordinating fundraising events, and more.
To reach the Southern California Support Group, contact: Gloria_lira@hotmail.com
As an orphan disease, one of our greatest challenges is in getting our message out to patients, their families and professionals. We have much to offer to the EB community and we need the help of patients and families in passing information along to healthcare providers, schools and other patients and families. For more information about distributing materials, email us.
Whether you bake, scrapbook, ride a bike or anything else fun and creative, your support matters. Many friends of EBMRF have turned their hobbies into successful fundraisers. Do you have a hobby that could make a good fundraiser? Let us know! See some examples below.
Do you have a suggestion for a post or a story to share? The EBMRF welcomes your input as part of The EB community. We would love to share your personal story with others. For more information, email us.
Check out this moving photography book documenting the daily struggles of Nicholas Zahorcak Living with Epidermolysis Bullosa by photographer Jodi Champagne. Proceeds benefit The EBMRF. To purchase the book:
Evansville High School student MJ Schulz has held basketball game fundraisers, given speeches at school and recently held her first Annual Walk to raise money and awareness for EB, all on behalf of her cousins Sophie and Sam, both who were born with EB. She rallied her community, getting nearly 600 participants in the walk and raising close to $15,000! Keep up the great work MJ!
UPDATE** They’ve done it again! Friends of Shane DiGiovanna braved the freezing cold waters on New Year’s Day 2013 to raise money for EB in the Annual Farcical Aquatics Jump in Connecticut. Thanks everyone!
On January 1, 2009, more than 20 brave souls took the plunge for EB by jumping into the frigid waters of Southport Harbor, CT. The 9th Annual Farcical Aquatics is now in its 2nd year of dedicating their jump to raising funds and awareness for EB in honor of 10 yr old Shane DiGiovanna who was there to share in the day. This year’s jump raised nearly $7,000 and was featured in the local press.
2012/2013 Update-Click link below for information on the 2013 Walk-Last year’s event drew 400 supporters and raised $7500 for The EBMRF-Thank you Kissell Family!
Kristy and David Kissell, along with family and friends, organized the 1st Annual Walk for EB in May of 2008 in Cincinnati, Ohio. A total of 350 people participated in the walk with just over $18,000 being raised to benefit the EBMRF. The walk was established after Kristy and David’s son, Carson, was born with RDEB in April 2007. Preparations are underway for this year’s walk. More information : www.walkforEB.org.
Jeff Blagg and friends climbed the 19,334 ft summit to Mt. Kilimanjaro on July 3, 2010, raising $2,700 for The EBMRF! Thanks Jeff, Nate and Dan!
EB advocate Gena Brumitt Gruschovnik established and spearheaded a campaign to recognize National EB Awareness Week, called “Walk a Mile in My Shoes” in honor of her who mother had a severe recessive form of the condition. Gruschovnik and a team of fellow advocates promoted this campaign’s inauguration, creating awareness on a journey from New York to California during the last week of October, with Rallies held in numerous American cities.