WHAT IS EPIDERMOLYSIS BULLOSA?
EB is a group of genetic disorders characterized by blister formation after minor trauma to the skin. This family of disorders range in severity from mild to the severely disabling and life-threatening diseases of the skin. Estimates indicate that as many as 100,000 Americans suffer from some form of EB. Try to imagine a person with painful wounds similar to burns covering most of his or her body. Unlike burns, these wounds never go away. For EB patients, riding a bike, walking or participating in sports is difficult because normal activities cause chronic blistering. Wounds may cover up to 75 percent of the body. Imagine a diet of only liquids or soft foods because blistering and scarring occur in the mouth and esophagus. Scarring also causes the fingers and toes to fuse, leaving deformities which severely limit function. Imagine a life tied to hospitals for wound treatment, blood transfusions, biopsies and surgeries. The eyes often blister preventing sight for days. Chronic anemia depletes energy and limits proper growth. There is little hope for life beyond 30 years. Children with EB are often referred to as Butterfly Children because their skin is as fragile as a butterfly’s wings.
This describes the life of a child born with the severe forms of Epidermolysis Bullosa.
Our Mission Is Simple …
Fundraise
Awareness
Research
Bulletin Board
GET TICKETS HERE!
Huge FDA News***
In May 2023, the US Food and Drug Administration (FDA) approved Krystal Biotech’s Vyjuvek (beremagene geperpavec), a topical gene therapy drug, for wound treatment in dystrophic epidermolysis bullosa with COL7A1 mutations. The EBMRF was instrumental in providing seed money for this research and the outcome is a giant step forward for EB patients.
For a full discussion, please see Treatment.
Additionally, A topical gel, Filsuvez (birch triterpenes), was approved by the FDA in December 2023 for treatment of wounds in patients aged 6 months and older with junctional and dystrophic epidermolysis bullosa.
EB Awareness Week October 25-31
CelEBrate Love!
HEALING WINGS BUTTERFLY NECKLACE NOW AVAILABLE!
DESIGNED BY MICHAEL RAVEN JEWELRY & KALEY CUOCO
This exclusive design can be purchased in Sterling Silver, Rose Gold, Yellow Gold or White Gold, with Diamond inset or your birthstone. $100/$395
50% of proceeds will benefit The EBMRF To purchase, visit ravendiamonds.com
October 2020-The EBMRF has partnered with Off The Menu to launch “America’s Sweetest” CelEBrity Bake Sale, taking place in Los Angeles on October 14th. 11 amazing CelEBrities joined forces with some of LA’s favorite chefs to create one of a kind desserts. Offered exclusively on National Dessert Day (October 14th) to support EB Awareness Week (October 25th-31st)
You can purchase the entire dessert box of all eight delicious creations for $125 at americassweetest.com
You can also visit any of the participating bakeries on October 14th to purchase the individual collaborations.
THIS EVENT ENDED ON OCTOBER 14TH 2020
The EBMRF has partnered with Josh Brolin, Kelly Clarkson, Courteney Cox, Kaley Cuoco, Josh Gad, Norman Reedus and Adam Sandler to launch an online auction, BACKSTAGE PASS, a virtual private Meet & Greet with your favorite stars. Funds raised from this Backstage Pass campaign will go to families who need help “stocking the supplies closet.”
AUCTION ENDED MAY 18TH 2020
