FOR IMMEDIATE RELEASE
Contact: Lisa Breuning, Public Relations Coordinator
Creating Awareness for Rare Skin Disorder at the Gwinnett Gladiators
Cumming girl affected with ichthyosis
CUMMING, GA (FEBRUARY 20, 2014) – Brian and Sam Zavitz are hockey fans. In particular, they are Gwinnett Gladiator fans. They are also the parents of 6-year-old Cate, who is affected with lamellar ichthyosis, a rare, genetic skin disorder. It was natural to combine both of these loves to create an evening of awareness and fundraising. On Friday evening, February 28, celebrated globally as Rare Disease Day, the Zavitz family and their friends will watch the Gwinnett Gladiators take on the Florida Everblades. During the evening, Sam will have the opportunity to distribute information about the Foundation for Ichthyosis & Related Skin Types (FIRST), the only national nonprofit foundation dedicated to helping those affected by ichthyosis. FIRST will be recognized as the organization of the night, and with sales of 100 tickets or more, the Gwinnett Gladiators will make a donation back to FIRST.
“There is no known cure for ichthyosis, only treatments,” said Jean Pickford, Executive Director of FIRST. “It is our hope that with funds raised at this event, we can continue to conduct more extensive research and 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 the Zavitz family 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 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.
« Back to Previous Page