The EBMRF is a volunteer, non-profit Foundation dedicated to helping medical scientists learn more about EB, its causes, the development of successful treatments, and ultimately, its cure. As the leader in research funding, our continued goal is to raise awareness and funds through special events, projects and the media.
get involved
How Can I Get Involved?
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:
Shop!
There are lots of fun ways you can shop to support EB. Start shopping in support of EB!
Become Involved in a Local Support Group
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.
Distribute EBMRF Materials to Local Medical Professionals
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.
Become involved in a Fundraiser
Whether you bake, scrapbook, ride a bike or anything else fun and creative. Many friends of EBMRF have turned their hobbies into successful fundraisers. See some examples below.
Friends of EB
Longtime friend and EB supporter James Laing of Hermosa Beach, California raised over $1500 for The EBMRF through his Rock For EB event on Nov 13th-5 bands performed and the evening included a silent auction, wine tasting and more-Thanks James!
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!
Taryn Cantor of Colorado raised over $13,000 through a school read-a-thon and Borders Bookstore fundraiser. Her Project was covered on the local news; The next year, Taryn and her friends from B'nai Brith Youth Organization held a bowl-a-thon and raised more than $500 in donations-Way to go Taryn!
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.
Read the article in The Connecticut Post...
Cassidy, Caitlin and Ryan Finn and their friends Cooper and Makenna Cowgill raised $48 from their lemonade stand; Another lemonade stand run by Alex and Sutter Ashcraft and Cloe for their friend Luke Langhor raised $116.
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.
The students of Kehillat Israel Preschool in Los Angeles raised $820 on behalf of their friend and classmate Brandon Joseph through their tzedakah (charity) boxes. A great way to teach kids about helping others.
Sean Garf & friends trekked thousands of miles to raise nearly $40,000 for EB Trek '08. Beginning in Utah and ending in Southern California, their bike journey not only brought them across the country, but into people's hearts. Families along the way spent time with the riders and helped cheer them on.
View the slideshow...
Patti & Rae Zabell, Luke & Danial Jones, The Lira, Delmege and Corradin families, along with several other EB families, hosted booths at the Miles for Melanoma Marathon and The Fibromyalgia Foundation's Walkathon, raising over $2,000 as welll as awareness for EB!
EB advocate Gena Brumitt Gruschovnik established and spearheaded a campaign to recognize National EB Awareness Week, called "Walk a Mile in My Shoes" (www.ebrelay.org) 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. Plans are underway for this year's event as well.
Jessica Dimas, age 11, created the wonderful butterfly artwork featured thoughout the EBMRF website design. Thank you, Jessica!
Share Your Personal Story
Do you have a hobby that could make a good fundraiser? We would love to share your personal story with others. For more information, email us.