EB in the Village and Singing with Alpha-1

October 14, 2008
Noonan Syndrome Conference

New Gallery: EB in the Village

Last weekend Rick met up with some great kids from the EB (Epidermolysis Bullosa) community and their families in Greenwich Village. Michele Disco of the organization DebRA, mom to Myles with EB, was introduced to Positive Exposure at a presentation at Sarah Lawrence, where she is a Genetic Counseling grad student. She set up a lunch with several other NY-area EB families, everyone ended up going to a park for photos, and the result you can see in this new gallery on the Positive Exposure website.

With the Alpha One Community in Virginia

Noonan Syndrome Conference
Sisters from the

Two weeks ago Positive Exposure went to the Alpha-1 Advocacy Alliance Conference in Arlington, Virginia. Though both Rick and I knew Anne Marie Benzinger–one of our hosts–through the Genetic Alliance, it was our first time at their conference. Everyone caught on to Positive Exposure right away, and soon photos were being snapped and interviews were being videotaped. As usual, I started out with some questions I wanted to ask during the interviews, but those quickly went out the window before the outpouring of stories before the video camera. It was a river made up of many lives, and I couldn’t help but get carried along with it.

Over dinner we were treated to a performance by talented musician and community member Eric Hansen. His song about Biff, a goose learning to fly, was a multi-generational tale, echoing what I had been listening to all day long: stories about families–genetic portraits–and things in common that create a sense of responsibility to one another. In the song the goose learns to trust on the way off the cliff to the unknown, just like the trust so many interview participants expressed about following the unknown course of their condition. It’s an awesome thing to hear story after story and be told that after all of the doctor visits and treatments what’s left is a full—a very full—life.

“Look for love like a man on fire,” sang Eric with a quiet voice seemingly in contrast to the urgency of the lyrics. But that serene urgency was the same that inspired some Alpha-1 members to bike dozens of miles just a couple months after their lung transplants. Maybe it was also present at dinner, where everyone ate and laughed and told stories, there in everything and everyone that weekend. Maybe that same quiet passion is infused into the entire Alpha-1 community, and anyone that must exercise their own strength all the time, with every breath.

The many faces of this strength are visible in Rick’s photos, which will be posted on the website soon. All the great video footage will help us work towards educating medical students about life with a genetic difference.

Many thanks to Anne Marie, Bill Poplett, and all the other wonderful Alpha-1 community members who contributed their unique beauty and fascinating stories that weekend.  Positive Exposure is the richer for it, as am I.

Coming events:
Neurofibromatosis Midwest Symposium, October 17-18
Tanzania trip, October 19-29

BBC news update on situation for people with albinism in Tanzania and the spread to surrounding areas



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