My son Michael was born with a rare genetic skin disorder called Epidermolysis Bullosa (EB) that leaves the skin vulnerable to friction. EB is a disease that results in skin tears and blisters both externally as well as internally. Even more troubling is an aggressive form of skin cancer that often befalls individuals with EB when they are in their late teens and early adulthood.
When I was pregnant, my husband Ryan and I went through the usual anxieties of soon-to-be first-time parents. We worried about whether the baby was going to be healthy, if we were going to be good parents, if we could raise our child to be a good person, etc. But when Michael was born missing skin on his lips, lower back, knee, and toe, and the doctors started scrambling for answers, we knew that our lives were going to change. We had to simultaneously mourn for a life we imagined while preparing for the life that was given to us.
One of the ways Ryan and I have learned to cope is to take action. We can only do so much to sustain a quality of life for our son because the options for him are so limited. Our only option currently is to bandage his wounds and treat infections and pain as it arises. For a child who experiences pain equivalent to a third-degree burn, that is a horrible choice. We are desperate to find a cure so that the suffering our son experiences on a daily basis comes to an end.
We wish for nothing more than to see him live life without the restrictions that his disease causes. This desperation led us to start seeking information about research efforts and ways to fund the research that could one day hopefully help our son.
We began by hosting an event that raised money for a nonprofit that donated directly to fund EB research. After that first event, we realized that we could handle taking on more, and that the more we did and the more money we raised, the closer we would get to our goal of a cure. We also wanted to be in contact with the leading researchers in the field and figure out what they needed to bring research to clinical trial. And we wanted to reach out to other parents like ourselves and let them know that there was hope.
Fueling our drive is Michael, who continues to inspire us on a daily basis. Through all of our fundraising efforts, Michael has learned to advocate for himself. He draws strength from the fact that there are so many people concerned with finding a cure for EB. Michael has even given presentations on how to make an “EB potion,” which is his version of a cure. He is only eight years old — we’d rather see him devising plans to build forts of sheets and sofa cushions.
The loftier and more specific our goals became, the more we realized we would need to start our own nonprofit. In 2012, we founded Heal EB with the help of our long-time friend, Jill Vedder. We evolved from hosting an event one year to an annual event every year and then added an online auction. As we gained momentum, Vitalogy Foundation stepped in as our fiscal sponsor as we awaited our 501c(3) approval.
In 2013, Eddie Vedder, lead singer of Pearl Jam and husband to Heal EB co-founder Jill Vedder, joined our board and helped us raise funds by singing at Rock for EB, an event we co-hosted with another EB organization.
Initially we gave money to the universities, Stanford University, and the University of Minnesota who are developing cutting-edge research in the field of EB, with the only restriction that it actually funded that research. As we became more familiar with giving strategies, we learned that giving as part of a group through a venture philanthropy agreement, which is an investment model that allows for the grants we supply to universities and commercial companies, when it proves successful, become a source of revenue we can then use to fund future research projects, which would make more of an impact on EB research advancements. It was during the collaboration phase of the venture philanthropy agreement among EB nonprofits that Ryan and I reached out to the Jackson Gabriel Silver Foundation to initiate discussions about merging our two organizations, which occurred on Oct. 1. It was a natural and obvious evolution if we wanted to take advantage of economies of scale and raise more funds to heal EB and eradicate the disease for future generations.
Our mission as a nonprofit and as parents of a child that suffers from EB is, and will continue to be, to find a cure for this devastating disease.
I want to thank Medium for giving us the opportunity to share our story and for being an additional outlet in the fight against this devastating disease. For those who might want to learn more about our personal journey, the type of research we’re supporting, or our foundation, EB Research Partnership, please visit www.ebresearch.org.
