Two parents of a young daughter affected with lamellar ichthyosis have founded Project Save our Skin (SOS) in Fort Worth, Texas to help raise awareness and money for ichthyosis research. In their efforts to learn more about ichthyosis after their daughter was born, they quickly realized how little information was available in their local area. Only when they discovered the Foundation, did they learn that information, resources, and support were readily available to them about this rare genetic disease. Being concerned and loving parents, they were eager for as much information as possible and their quest began to make a difference in their daughter's life.

Armed with this passion, Cort DeHart and his wife, Elizabeth Berry, formed Project SOS, a non-profit organization, and partnered with the Foundation to fund lamellar ichthyosis research. They launched the F.I.R.S.T./PROJECT SOS Lamellar Ichthyosis Research Grant program to encourage and support the investigation into the causes, treatments and potential cures for lamellar ichthyosis. The Foundation anticipates funding a lamellar ichthyosis research grant this year through the new research program. Project SOS plans to provide the funding for this year's grant and continue to provide funding on an annual basis for lamellar ichthyosis research. Project SOS raises money through several fund raising events. Each spring, Project SOS sponsors the Broken Oar Tarpon Invitational, a charity fishing tournament in Key West, Florida. The event is a four-day, guided catch-and-release fly fishing tournament. To participate, each angler must pledge to raise money for Project SOS and lamellar ichthyosis research. Through the generous efforts of the participants and their sponsors, the Broken Oar is the main fundraising event for Project SOS.

Cort's law firm also participates in fund raising for lamellar ichthyosis research. Every year, the law firm of DeHart Crockett, P.C. hosts its own charity event called Crawfish in the Park for the benefit of Project SOS. On April 1, 2006 the firm hosted the huge crawfish boil with live music, children's activities, and all you can eat crawfish. Current and former clients, local attorneys, judges, and family and friends were all invited to help support Project SOS and ichthyosis research. Attendance and donations continue to increase annually. This year's event had a record attendance of over 600 people and raised over $14,000. If you would like information about either event, please send your inquiry to [email protected].