Johnsonburg High School Hosts Benefit Concert for Extremely Rare Skin Disorder
FOR IMMEDIATE RELEASE
Contact: Maureen Neville, Communications Director
Colmar, PA - September 22, 2014 - The Johnsonburg community will gather together to support one of their own on Saturday, September 27. Bailey Pretak, a lifetime resident of Johnsonburg will be performing in the "Release the Butterfly" concert to support the Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST). Bailey is affected with lamellar ichthyosis, a rare, genetic skin disorder. She is also the 2014 Ms. Pennsylvania in the Pure American pageant, first runner up at the national pageant, and an accomplished singer and dancer. Many of Bailey's friends, and fellow dancers and singers, will come together to entertain the crowd at the Johnsonburg Senior High School on Saturday evening. This year, special guest, Hunter Steinitz, affected with the rarest type of ichthyosis, harlequin ichthyosis, will be joining the event. Hunter has been a staunch supporter of FIRST and ichthyosis awareness for her entire life, having appeared on the Maury Povich show at just 6 years of age, and most recently appearing on the Katie Couric show this past summer. Hunter was also interviewed at the 2014 Family Conference, regarding her condition and her special connection to FIRST.
"There is no known cure for ichthyosis, only treatments," said Jean Pickford, Executive Director of FIRST. "It is our hope that with the funds raised from this event, we can continue to provide services to the members of FIRST taking us one step closer to finding a cure and better management of the disorder. We can't thank Bailey and Hunter enough for their efforts and continued support."
For more information about the event, or to purchase tickets, contact the FIRST office at 215.997.9400.
About Foundation for Ichthyosis & Related Skin Types (FIRST)
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