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Contact: Maureen Neville, Communications Director
215.997.9400
mneville@firstskinfoundation.org

Award-Winning Photographer turned “Diversity” Activist to Keynote Rare Disease Conference in Indiana

COLMAR, PA (March 17, 2014) Announcement: Rick Guidotti to Keynote 2014 National Family Conference in Indianapolis, Indiana, June 20-22, for FIRST, Foundation for Ichthyosis & Related Skin Types, Inc.^®  Guidotti is an award-winning former fashion photographer turned "diversity" activist, and founder and director of the education and advocacy organization, Positive Exposure. As ichthyosis is a set of rare genetic skin disorders that can often be disfiguring, Guidotti has photographed several members within the ichthyosis community, all in effort to support his message: there is beauty in all of humanity. His photographic exhibition, Positive Exposure; The Spirit of Difference, premiered at the People’s Genome Celebration, June 2001, at the Smithsonian’s National Museum of Natural History in DC and continues to exhibit in galleries, museums, and public arenas internationally.

“There is no known cure for ichthyosis, only treatments,” said Jean Pickford, Executive Director of FIRST.  “In addition to the many educational and networking opportunities for affected families, we are delighted that Mr. Guidotti will be sharing his message, and his work, which honors the richness and beauty in all of humanity.”

According to FIRST, each year, more than 16,000 babies are born with some form of ichthyosis, of those, approximately 300 are born with a moderate to severe form.  This disorder affects people of all ages, races, and gender. The disorder usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime. 

About the Foundation for Ichthyosis & Related Skin Types, Inc.^®
The Foundation for Ichthyosis & Related Skin Types, Inc.^® (FIRST) is the only nonprofit foundation in the United States dedicated to families affected by the rare skin disorder ichthyosis.  Approximately 300 babies each year are born with a moderate to severe form of ichthyosis.  FIRST educates, inspires, and connects those touched by ichthyosis and related disorders through emotional support, information, advocacy, and has supported more than $1.4 million in research funding for better treatments and eventual cures.  For more information, call toll-free at 1.800.545.3286 or visit www.firstskinfoundation.org.

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