PE at Neurofibromatosis Conference

October 19, 2008

Positive Exposure had another first this weekend as the team traveled to our first Neurofibromatosis conference with Neurofibromatosis Inc., Midwest. Rick had previously photographed several people with the condition since PE’s early days, including the People’s Genome Celebration in 2001, but it was the first NF conference for PE. Even before we arrived Diana and Debbie already made us feel welcome with how graciously they made the arrangements to get both of us from two different cities to the same place at the same time…no small feat! The conference took place at the very comfortable Hamburger University just outside of Chicago, and it was a blast.

Having gone to quite a few conferences by now, there always comes a moment early on, during the introductory speech about that particular genetic condition, in which I have to accept that I have only a rudimentary understanding of how genetics work, and then jump in. Each community has its own particular characteristics and challenges, but luckily Positive Exposure’s vision is wide and elastic and can serve as a guide in any setting.  The very enthusiastic audience saw Rick’s presentation and immediately “got it” (PE’s vision of the beauty in difference) too.  After his lecture he began riling up all the kids as usual, taking photos against the backdrop of fall leaves and sculptured landscapes.  I recorded interviews with some NF community members, and everyone was just bursting with insight.

It struck me at this conference, as it has at a few others, that many of the people I talked to were caregivers of one kind or another: taking care of parents, or parents themselves; or else working as case managers for people with learning challenges or disabilities. It always seems like a miracle to me that anyone with a health problem would be able to look outside him or herself and attend to others’ needs, but so many do. Marcy expressed her enthusiasm for PE’s work not only with NF, her condition, but with Sturge Weber, Smith-Magenis, and several other genetic conditions that some of the children on her caseload have. Dave told a story about a bike ride to raise money for a charity.  Several other people were really interested in sharing ideas that might help medical students treat their future patients. The teenagers were quick to give advice to a hypothetical peer who was having trouble fitting in. From my perspective behind the camera, it’s an unbelievable generosity.  We’ll share the photos and video footage from the conference soon.

Thanks to all who lent their faces and stories to Positive Exposure’s celebration of difference, and thanks to all who made the trip possible.



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