FIRST celebrates 30 years!
FIRST was incorporated on January 2, 1981.  Here are some of important milestones that have been achieved since. 
  • Children and adults with ichthyosis come to University of California Dermatology Clinic for treatment with a new drug, Accutane®
  • Pam Brown, Barbara Landwehr and Mary Williams, MD begin to share with each other the challenges of raising a child with ichthyosis
  • Pam Brown and Barbara Landwehr publish the first newsletter
  • Corporate donations are received from two pharmaceutical companies
  • 1st chapter meeting held in San Francisco Bay Area on November 2nd
  • 2nd chapter meeting held in Ohio at the office of Dr. Frank Yoder
  • The name Ichthyosis Focus is adopted for the newsletter
  • The National Ichthyosis Foundation (NIF) is incorporated on January 2, 1981
  • 3rd chapter meeting held in New York
  • Ted Shackelford joins N.I.F. Board of Directors
  • Medical Advisory Board is formed
  • Corporate sponsor for newsletter is obtained
  • Regional chapters are formed
  • NIF attends its first American Academy of Dermatology Annual Meeting
  • Chapters begin to raise money
  • Offices move to Belmont, CA
  • Jack Klugman crusades for ichthyosis. NIF involved in filming an episode of Quincy that addresses Orphan Drugs.
  • 1st National Family Conference, Chicago, IL
  • Members & Ted Shackelford appear on AM San Francisco


  • 2nd National Family Conference, Washington, DC
  • 3rd National Family Conference, Las Vegas, NV
  • 4th National Family Conference, New Orleans, LA
  • NIF changes its name to Foundation for Ichthyosis & Related Skin Types, Inc. (FIRST) to include a broad spectrum of keratinizing disorders and to include “orphan” diseases 
  • Offices move to Raleigh, NC


  • 6th National Family Conference, Orlando, FL
  • FIRST hires its first paid executive director, Susan Snyder
  • More Regional Conferences in New York & Indianapolis
  • Representatives from FIRST testify before Congress
  • 8th National Family Conference, Chicago, IL
  • Funding becomes available and the National Registry for Ichthyosis and Related Disorders begins
  • National Registry for Ichthyosis hires professional coordinator
  • 9th National Family Conference, San Diego, CA 
  • FIRST offices move to Philadelphia
  • Regional Conference, Indianapolis
  • First 100 patients are enrolled in the National Registry for Ichthyosis
  • FIRST’s website goes live on the Internet
  • 10th National Family Conference, Cherry Hill, NJ
  • FIRST receives funding to hire a professional coordinator for the Ichthyosis Support Network (ISN)
  • FIRST lobbies Congress for funding
  • 11th National Family Conference, Philadelphia, PA
  • FIRST funds its second research grant through the Dermatology Foundation
  • Molecular diagnosis is made possible through the Registry
  • Website is professionally updated, hosting services donated, inquiries increase significantly 
  • Regional Conference in Bloomingdale, GA
  • FIRST funds its third research grant through the Dermatology Foundation
  • Two personal major gifts are received
  • FIRST secures funding to update its resource library
  • Major fundraising campaign is launched for research money


  • 4 year strategic plan is adopted, top priorities include tele-medicine project, clinical scholar program, new data-base management system, new website
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