BENEFITING: EB Research Partnership
Kate Hanson wrote -
1. A commandment or precept, especially one found in the Bible
2. A good deed
In June of 2012 I celebrated my Bat Mitzvah. This is an exciting milestone in my life, and one that I have worked towards for many years. I am excited to have celebrated my Bat Mitzvah with my friends and family. But I also know that helping others is the true Mitzvah and is really what is most important.
For my Mitzvah Project, I decided to support the Jackson Gabriel Silver Foundation (JGSF), a nonprofit organization that funds research for Epidermolysis Bullosa ("EB"), also known as “Butterfly Disease”. EB is a devastating, painful, disfiguring and currently incurable blistering disorder that affects children from birth. The foundation funds scientific research with the goal of curing and treating this devastating disease.
I selected this charity because the lead singer in the band who played at my Bat Mitzvah has a young son with EB. The boys’ name is John Hudson Dilgen and he is a great kid who suffers unimaginable pain every day. Visit www.johnhudsondilgen.com to learn more.
Practically speaking, a child who suffers from EB lacks a critical protein that binds his or her layers of skin together. Imagine your skin being as fragile as a butterfly's wings. Imagine every movement you make causing your skin to shear off your body. Not only does EB affect external skin, but internal organs as well.
Curing a rare disease is always a race against the clock. But curing EB is a race against a clock moving at warp speed. Children like John Hudson have a 60% risk of dying by age 15, and nearly a 100% chance of developing an aggressive, painful and fatal form of skin cancer over the course of his shortened life.
There is tremendously encouraging work underway, and a cure for EB is within reach. The Jackson Gabriel Silver Foundation has already funded key research projects and is excited to collaborate with the brilliant scientists working on a cure for EB. This year alone, the Jackson Gabriel Silver Foundation has awarded $175,000 in research grants.
Please consider making a donation to help me continue my fundraising. Thanks to all who have donated, I have surpassed my fundraising goal of $2,000. Every dollar brings us a step closer to finding a cure. Spread the word about EB, because knowledge is power!
Thank you so much,