Q&A with an EB Advocate: Jamie Silver of Jackson Gabriel Silver Foundation, Part II

Last week, we began featuring part of our conversation with Jamie Silver, who co-founded the Jackson Gabriel Silver Foundation with husband Alexander. The foundation held its signature annual event, ACTion for Jackson, late last month at Christie’s, the renowned NYC auction house, and featured guest speaker Dr. Alfred Lane of Stanford University and Dr. David Woodley of University of Southern California.

After sharing that the main mission of the foundation is to support EB research efforts, Jamie tells us this week how the group has been most successful in raising much-needed funds for this research support, and about how life has changed since the launch of the foundation for young Jackson Gabriel Silver, who is now 5.















EB Resource (EBR): One of the things we noted on your website was your organization’s attempt to represent many different organizations and efforts involved in EB research, support and advocacy in the community. Was that a conscious effort on your part to be so inclusive?
Jamie Silver (Jamie): Definitely. We felt that progress would only happen if people are working together and talking to each other. In the past, some of the different organizations had not worked optimally with each other, which can defeat the purpose. We’re all trying to do the same thing with limited resources. We’re all trying to find a way to help our kids or other kids and adults with EB, so why not join forces and pull our resources together? So that was a very deliberate goal with our foundation.

EBR: What have been your more effective campaigns that have allowed you to be successful in your fundraising efforts?
Jamie: As an organization, we hold a number of events every year but one very large event we hold is ACTion for Jackson, and this year is our third year doing it. It’s grown substantially since the first one. What started as a way for Alex and I to introduce our friends, family and colleagues to EB has grown into a much larger event. This year’s event, which was held at Christie’s in New York, had 400 people and raised over $360,000. EB is a disease that most people have never heard of so a big piece is educating people about EB and how devastating it is to those stricken. I feel like all that people need to do is look at a website or meet a child or adult with EB to see how devastating it is. EB is very apparent. It is not a hidden disease. Once you’ve met someone with EB or seen pictures of someone with EB, you know that it exists. We have found that when people learn about EB, they are often generous in helping out.

One of the most powerful fundraisers for the foundation has been the charity marathon circuit. It started in 2011, when we fortunately received five spots in the New York City Half-Marathon, which was the most a first time charity partner could be allocated. We had been invited to be part of the community charity program and the New York City Half and Full Marathons. We felt lucky because these are extremely popular and extremely hard to get into. The runners commit to raising a certain amount of money for the charity that they’re running on behalf of. That first year, we had five runners in the half marathon, and it built a lot of excitement about it. Then we had five runners in last year’s NYC full marathon. What was so wonderful about that was there was a mom of a boy in Utah who ran and a father and an aunt and uncle of a girl in Atlanta who ran, so it gave these families a chance to participate in raising money for research and advocating for their loved ones with EB, and that ballooned. In the half-marathon in March, we had five moms of children with EB who ran, and they came from around the country. I really have seen this as a vehicle for people who haven’t necessarily known how to get involved with supporting research. It’s given them a way to do it and a way to allow their friends to help them.

Then we had a young man, a college student with EB who spent last year in Israel, and he put together a team of over 40 runners for the Jerusalem Marathon who were running to raise funds for EB research. For another upcoming event, a couple of moms got together and said, "Let’s do a team for the Disney Marathon," which is in January. You can do a 5K, half-marathon or a full-marathon. So far we have a team of 40 people. It’s been a wonderful way to build an EB community and one that is learning about what’s happening in research and participating in finding a cure along with us! Along the way, these runners have raised well over $120,000 for research in 2012 alone.

EBR: How does this kind of response compare to your expectations when you first launched the foundation?
Jamie: When Alex and I first started the foundation, it was definitely grassroots. We knew we really wanted to support research but we certainly didn’t imagine that in two years, we would have so many people involved and excited about helping. In addition, all of the enthusiasm from the medical community about what’s happening in the field of research is helping us grow. It’s definitely gone much faster and grown bigger than we hoped. When I think about the fact that Jackson is going to turn 5 this year and that by the end of 2012, we will have raised well over $1 million for research, it’s unfathomable in a way. And, even more exciting, most researchers are more excited than ever about the prospects for available treatments and cures in a reasonable timeframe.

EBR: So how is Jackson doing?
Jamie: He’s doing well for the most part. Jackson has a mild to moderate form of recessive dystrophic EB. He’s in preschool and loves it. He’s really social and loves learning and is very enthusiastic. But he deals with a lot of pain. We bathe him every day and change his bandages, and it can be painful. He has a lot of anticipatory anxiety about it. Now that he’s turning 5, he’s starting to ask a lot of questions – why do I have this? Who else has this? Why don’t my friends have this? Why can’t the doctors make it better? He knows that we started this organization. At his age, he certainly doesn’t understand fully what this is all about, but he goes out to the marathon events and he cheers. We are very honest in telling him that Daddy and I set up this foundation to work really hard with doctors so we can make his skin less fragile and sensitive and so that help all kids who get these bad boo-boos and blisters when they fall down. So he is definitely gaining an understanding of what all of this is about.


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