Bullet Points for Media
- Ichthyosis (pronounced ick-thee-oh-sis) is a family of rare, genetic skin diseases characterized by dry, cracked, scaling skin that may be thickened or very thin
- At least 300 babies are born each year with a moderate to severe form of ichthyosis.
- There is currently no cure for ichthyosis. Dedicated researchers continue to develop effective ways to manage the disorder.
- The thickness of the skin and scale of those affected does not allow their sweat to reach the surface of their skin and cool them effectively. In warm weather, those affected are at risk for overheating, heat exhaustion, and heat stroke.
- The Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) is the only national non-profit foundation located in the United States dedicated to assisting families affected by ichthyosis.
- FIRST provides information on its website www.firstskinfoundation.org, printed publications, and a quarterly newsletter, Ichthyosis Focus. FIRST hosts a biennial national family conference, and patient support forums which provide families the opportunity to create connections with each other and consult with leading medical experts.
- FIRST’s Research Grant Program has funded 16 worthy projects totaling nearly $1.7 million since 2006.
For additional information email Moureen Wenik FIRST Executive Director
January 2, 2016 - FIRST Celebrates 35 Years!
May 2, 2015 - Release the Butterfly Concert is Going on Tour
April 23, 2015 - May is Ichthyosis Awareness Month. Use Your Voice.
February 12, 2015 - Be FIRST on the Dance Floor!
January 12, 2015 - Running for Rare at the Houston Marathon
November 3, 2014 - A Beach Bonfire and an Evening of Yoga
October 31, 2014 - UFIRST Scholarship Awarded in Grafton
October 31, 2014 - UFIRST Scholarship Awarded in Attleboro
October 31, 2014 - UFIRST Scholarship Awarded in Penryn
October 31, 2014 - UFIRST Scholarship Awarded in Jackson
October 31, 2014 - UFIRST Scholarship Awarded in Hilliard
October 31, 2014 - UFIRST Scholarship Awarded in South Abington Township
October 14, 2014 - Monsters Running for Lucky 13!
September 22, 2014 - Johnsonburg High School Hosts Benefit Concert for Extremely Rare Skin Disorder
September 1, 2014 - Community Joins Together to Support Rare Skin Disorder
March 27, 2014 - National Rare Skin Disease Conference comes to Indianapolis
March 18, 2014 - Famed Photog. to Keynote Rare Disease Conference
February 20, 2014 - Creating Awareness at the Gwinnet Gladiators
November 20, 2013 - National Nonprofit to Partner with Boston Celtics
October 29, 2013 - Grassroots Fundraising Record Shattered!
October 24, 2013 - Running for Rare Disease in Hagerstown, Maryland
October 8, 2013 - Monsters Running in Friendswood, Texas
May 25, 2013 - Woman with Harlequin Ichthyosis Delivers a Healthy Baby Boy!
April 15, 2013 - May is Ichthyosis Awareness Month
March 20, 2013 - Tommy Gears Up for Baseball Season
February 26, 2013 - FIRST Partners with Major League Baseball Teams
December 18, 2012 - FIRST Receives $35,000 Donation from Brentwood Productions