‘Your Donations Can Buy Time. Your Generosity Can Give Life’
Making progress to find a cure for a devastating and rare skin disease
Good evening. I am thrilled to welcome you to 2014’s ACTion for Jackson. I am Alex Silver, and my wife Jamie and I are two of the founders of the EB Research Partnership.
Tonight I’d like to talk to you about progress. At the first ACTion for Jackson in 2009, we raised $60,000 to fund protein replacement therapy for Epidermolysis Bullosa at USC. Five years later, Shire is working on bringing that therapy to a clinical trial. That’s progress. When we first started our work, Stanford’s gene therapy, the brainchild of Dr. Al Lane, was merely a theory, and now it is in clinical trials. That’s progress.
This year, the Jackson Gabriel Silver Foundation merged with HealEB, founded by our friends Heather and Ryan Fullmer and Jill and Eddie Vedder. Together, we’ve created the EB Research Partnership. Our name is simple, as is our goal. We fund research aimed at treating and curing EB. We partner with members of the community, parents, researchers, for-profit companies, universities and the government. Unlike many life-threatening conditions you might hear about, a cure for EB really is within our grasp. Progress.
For those of you new to EB, it’s a devastating and potentially deadly skin condition that causes blisters and wounds all over the body. Imagine the pain you feel when you walk around in a new pair of shoes and end up with raw blisters on your feet. Now imagine that feeling all over your body. It’s excruciatingly painful.
The EB Research Partnership is the largest research-only EB non-profit, and we are just beginning to grow into our potential. What Jamie and I started five years ago in honor of our son Jackson has evolved into a movement involving the entire EB community and many beyond it. One of our research projects—Dr. Tolar’s gene editing at the University of Minnesota—focuses on EB but can potentially help those who suffer from many of the other 5,400 incurable genetic conditions. This is tremendous progress.
At past ACTion for Jackson events, I’ve shared stories of children who suffer from this horrendous condition. I’ve asked you to imagine even the simplest of childhood activities—accidentally tripping on the playground or swallowing a piece of candy—ripping the skin off outside and inside of your body. This year I want to focus on an often-forgotten population of people who are vital to the progress of finding a cure—adults with EB. As research trials usually begin with adults, these courageous people are crucial to making an EB cure a reality.
Julieanne is a remarkable 39-year-old woman. When she was born, her parents sought a diagnosis and were told repeatedly that her sensitive skin would go away with time—well, it hasn’t. At eight years old, Julieanne told her parents that she had had enough: She didn’t want to visit any more doctors or answer questions about whether she was contagious or attacked by animals. Julieanne and her parents were continually assured that a cure was right around the corner. At eight, she was told it would happen by 13. At 13, it was by 16, and at 16, it was by 23. When I asked her what those years were like, she said “My whole life I covered up. I didn’t want people to see me. People stare all the time and it just never stops.”
With constant unfulfilled promises, you would think that Julieanne might give up and distance herself from the EB community. You couldn’t be more wrong. As she told me, “Hope is alive inside of me. You have to keep looking and moving forward. I don’t care what I have to go through to make this cure a reality. I do it for the kids who have EB today. I don’t want any child to go through what I did. I will do whatever it takes for research to change their lives.”
Michelle Hall is a 27-year-old woman studying to be a CPA, though she speaks with the wisdom of a person three times her age. She has an attitude that we can all benefit from—in public, she doesn’t mind showing off her scars. If people are uncomfortable, Michelle says it’s their problem. She pushes her limits, but she pays for it. A night out dancing with friends means three days in bed recovering from the wounds that it leaves on her body. “Totally worth it because I rocked it,” is Michelle’s attitude. Despite this rock-star outlook, she cautions that life is never simple for her. When she goes to lunch with friends, she scans the menu for something that she won’t choke on because her throat has been ravaged by EB. When asked about the role of EB research in her life, she shared, “I am not looking for a cure for my pain. I can live with my fate. But I want to be the guinea pig, to spare kids who are living with EB or have yet to be born. I am more optimistic than I have ever been—research has advanced so much—and what we are missing is so minor. I know it is possible to fix.”
We’re honored that both Julieanne and Michelle are with us this evening, and I’d like to take a moment to celebrate their courage and unwavering dedication to helping us find a cure. These are two people who have been robbed of so much in life. They have experienced pain that would cause most of us to faint or retreat from the world, who have battled infections, surgeries and blisters that are beyond the imagination of most. Though possible, it is unlikely for Julieanne or Michelle to benefit from much of the research taking place now. They are giving themselves and their bodies to research so that the next generation—Jackson’s generation—can benefit and won’t have to suffer the way that they have.
So, what can we give back to them? What can we do to honor the sacrifice that Julieanne and Michelle are willing to make? The answer is clear. We can give to make a cure a reality and most importantly, quickly.
Most of us take time for granted because our time horizons are long. But for someone with EB, time moves so much faster and their life expectancy is likely 50 percent shorter than yours or mine.
I am the father of a seven-year-old with EB; I know for my son how precious time is.
But what if you could give the gift of time? Dr. Tolar believes that if we can deliver the $3.5 million needed to validate his work, it will cut the time to clinical trial by 50 percent.
In other words, your donations can buy time. Your kindness can fund progress. Your generosity can give life.
This evening, and our progress, would not have been possible without the generosity of every individual in this room. I want to thank all of our sponsors, especially our title sponsor RBC, for their generosity. I want to thank all of you for coming. Because of you, we have already raised over half a million dollars tonight before our auctions, to fight EB.
Megan, another young woman with EB, said, “Beating EB is not an individual victory. It takes a village or more to manage and beat.” You are that village, and if we are to beat EB for Jackson, Michael, Julieanne, Michelle, Megan, and the many others like them, it will be because you make it possible.
This speech was delivered at ACTion for Jackson at the New York Public Library on Nov. 6, 2014.
Read more about EB on Medium:
When our son was born with an incurable genetic skin disorder, we cofounded a nonprofit with Eddie Vedder to lead the…medium.com
Butterflies are everywhere. Some of us wear them subtly on charms around our necks or dangling from our ears. Others…medium.com
Jackson Gabriel Silver Foundationmedium.com