January 2nd, 2021 marks the 40th anniversary of the founding of Foundation for Ichthyosis & Related Skin Types, Inc.® (FIRST) formerly the National Ichthyosis Foundation (N.I.F.). Founded in the San Francisco, California area and nurtured there until its move to Raleigh, North Carolina in 1989, FIRST has never swayed from its central mission - offering information, education, and support services to its global membership of persons affected with ichthyosis and their families.
January 2nd, 1981, is the date on which the National Ichthyosis Foundation was chartered as a nonprofit charitable organization. The Articles of Incorporation were formally adopted, and N.I.F. officially became an entity. January 2nd is Founder's Day.
N.I.F.'s original founder, whose daughter was affected with ARCI-lamellar ichthyosis, enlisted the support of research dermatologists and specialists in ichthyosis, many of whom remain active with the foundation and the Medical and Scientific Advisory Board.
In 1989 members of N.I.F.'s Medical and Scientific Advisory Board suggested that a great many keratinizing disorders (or disorders in which faulty keratinization plays a role) which were closely related to ichthyosis were lost in the shuffle of rare, 'orphan' diseases, and that the National Ichthyosis Foundation might consider broadening its mandate and its service base by including this broad spectrum of disorders. In agreement with this idea, the Board formally changed the organization's name to the Foundation for Ichthyosis & Related Skin Types, Inc.,® or FIRST. A move to North Carolina was made at about this same time to accommodate FIRST's voluntary Board President and unofficial director, an adult affected with epidermolytic ichthyosis whose family was essential in providing genetic information used by researchers to identify the underlying genetic cause of this disease.
FIRST continued to grow and by 1992 programs and services had become too demanding to be administered by a volunteer Board supported by an administrative assistant. FIRST hired its first paid executive director, then in a part-time position. She made great strides toward effecting the transition, as well as accomplishing a great deal in the area of legislative advocacy - particularly regarding the National Ichthyosis Registry. FIRST's next Executive Director, the father of an affected child, accepted the reins of the foundation and continued to expand the reach of FIRST. He increased membership, and more importantly, the services FIRST was able to offer its members, through improvements in the quarterly newsletter, the Ichthyosis Focus, and with his wife, expanded the Regional Support Network.
As FIRST continued to grow and expand programs and commitment to advocacy, its national office was moved to the Philadelphia area in 1995, to allow better access to the Washington, DC area. FIRST became more involved with the Coalition of Skin Disease Advocates, the Alliance of Genetic Support Groups and made our presence known on the World Wide Web.
FIRST continues to be based in the Philadelphia area and is staffed by Chief Executive Officer Christopher Boynton and full-time professional staff, Board of Directors and Medical Advisors continue to increase the range and quality of the programs and services that the Foundation offers its members.
Watch this History of FIRST video, Celebrating 35 years!