Meet Tilly Layne Wilkes. She was born with Epidermolysis Bullosa (EB). Her skin is as fragile as butterfly’s wings. Tilly wants to raise funds for her charity – EB Research Partnership Australia so they can find a cure for her and all the other kids living with this cruel disease.
This is the story of Michelle Hall. She was born with a severe form of EB. Now, for the first time, she has hope that she and thousands of others, will see a cure.
At Amazon Web Services’ 2019 IMAGINE: A Better World, A Global Nonprofit Conference in Seattle, WA, EB Research Partnership Co-Founder Jill Vedder and CEO Michael Hund give the closing keynote address on how EB Research Partnership is accelerating the path to finding treatments and cures for EB, and in the process, changing how cures for rare disease are found.
Eli Meyer is 6 years old. He’s just a regular kid; he enjoys arts and crafts and jumping on his trampoline. Eli also has Junctional Epidermolysis Bullosa.
Eli’s family adopted him from China when he was 4 and they live in California. His older sister Lily didn’t like the stares that Eli received from strangers when they were out and about. The siblings decided to try to make a change and started the #ComeSayHi movement. Instead of staring, Eli and Lily encourage people to simply “Come Say Hi” to Eli to learn about EB and how they can help. They believe that when people understand each other and accept others’ differences, the world will be a better place.
Eli and Lily’s message gained national attention after being broadcast on the WE Day special that aired on ABC on August 9, 2019. EBRP Co-Founder Eddie Vedder surprised Eli on screen with a new song written just for him and thanked the siblings for their noble efforts. Watch the video to learn more!
Brady the Brave and his family won’t stop fighting until they find a cure.
Rowan is a 3-year-old girl living with Recessive Dystrophic Epidermolysis Bullosa. EBRP has given Rowan’s parents hope for a cure for their daughter and all others living with this devastating disorder.
Eddie Vedder of Pearl Jam and EBRP Board Member discusses Epidermolysis Bullosa, a devastating skin condition, along with Dr. Jakub Tolar, a leading researcher, and brave kids and grownups who battle EB every day.
This is a “day in the life” of Michael Fullmer, who is living with EB, a rare and life-threatening skin disorder that affects children from birth. The good news is that a cure is within reach.