Running for Rare Disease

FOR IMMEDIATE RELEASE
Contact:  Maureen Neville
215.997.9400
1.800.545.3286
@FIRST_Skin
mneville@firstskinfoundation.org
www.firstskinfoundation.org

Running for RARE DISEASE
Affected family hosts Jane’s 5K for a Cure

Washington County, Hagerstown MD (October 24, 2013) –  Margie Sherlock and family will be  hosting a 5K race at Washington County Ag Center in Hagerstown, MD on October 27th.  This event serves as a fundraiser for the Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST). Additionally, a sponsorship website has been developed to collect donations leading up to the event. Thus far, $67,137.00 has been raised.

Margie’s daughter, Jane, is affected with the rare skin disorder, Harlequin ichthyosis.  Ichthyosis is a family of rare, genetic skin disorders that causes the skin to become scaly, crack, and peel.  Along with a host of other disabling side-effects, ichthyosis also prevents the skin from sweating, which can lead to complications from overheating. 

“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 Jane’s 5k Run we can continue to support 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 Margie Sherlock and her 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 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. 

For additional details about FIRST and this event, visit FIRST’s website, www.firstskinfoundation.org or email mneville@firstskinfoundation.org.

Link to: Hi-Res Photos

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.  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.

 

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