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

A Beach Bonfire and an Evening of Yoga
Fun at the beach raising money to support children with rare skin disorder

SANTA ROSA BEACH, FL (November 2014) - How about some sunset yoga and a beach bonfire?  Several local families, the Rodriguez, Green and Nicolosi families, are hosting a fun-filled evening on the Dune Allen Beach Access in Santa Rosa on Sunday, November 8, at 4:00 pm to raise funds for the Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST).  This group is also raising awareness about the rare skin disorder that affects their children, Gabby, Teo, Mykail, and Zaria, all of whom are affected with ichthyosis.

There will be food, music, crab hunting, all-you-can-eat ‘smores, door prizes and more!  The suggested donation for the event is $10, which will also feature sunset yoga by Jessica Nicolosi.  For more information, contact Amber at 469.328.5361.

FIRST is a national non-profit foundation dedicated to helping those affected with the rare skin disorder, ichthyosis. “There is no known cure for ichthyosis, only treatments,” said Jean Pickford, Executive Director of FIRST.  “It is our hope that, with funds raised from this event, we can continue to provide services to the members of FIRST and also conduct more extensive research, taking us one step closer to finding a cure and better management of the disorder.  We can’t thank these families enough for their efforts and support.”

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 disease affects people of all ages, races, and gender. The disease 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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