30th Anniversary of FIRST
FIRST celebrates 30 years!
FIRST was incorporated on January 2, 1981. Here are some of important milestones that have been achieved since.
1980
- 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
1981
- 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
1982
- 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.
1983
- 1st National Family Conference, Chicago, IL
- Members & Ted Shackelford appear on AM San Francisco
1984
- 2nd National Family Conference, Washington, DC
1985
- 3rd National Family Conference, Las Vegas, NV
1986
- 4th National Family Conference, New Orleans, LA
1987
- 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
1988
- Informational Brochures Created: Overview, Genetics & Informational Brochure
- 5th National Family Conference, New Haven, CT
1989
- Offices move to Raleigh, NC
1990
- 6th National Family Conference, Orlando, FL
1991
- 7th National Family Conference, Williamsburg, VA
- Creation of the Regional Support Network (RSN)
- 1st Regional Conference at Duke University
1992
- FIRST hires its first paid executive director, Susan Snyder
- More Regional Conferences in New York & Indianapolis
- Representatives from FIRST testify before Congress
1993
- 8th National Family Conference, Chicago, IL
1994
- Funding becomes available and the National Registry for Ichthyosis and Related Disorders begins
1995
- National Registry for Ichthyosis hires professional coordinator
- 9th National Family Conference, San Diego, CA
1996
- FIRST offices move to Philadelphia
- Regional Conference, Indianapolis
1997
- First 100 patients are enrolled in the National Registry for Ichthyosis
- FIRST’s website goes live on the Internet
1998
- 10th National Family Conference, Cherry Hill, NJ
1999
- FIRST funds its first research grant through the Dermatology Foundation
- Jane Bukaty Membership Assistance Fund is established
2000
- 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
2001
- Regional Conference in Bloomingdale, GA
- FIRST funds its third research grant through the Dermatology Foundation
- Two personal major gifts are received
2002
- 12th National Family Conference, Seattle, Washington
- Five-year strategic plan adopted, top priority is research
- FIRST receives first Gold Triangle Award from American Academy of Dermatology for its new website www.scalyskin.org
2003
- FIRST secures funding to update its resource library
- Major fundraising campaign is launched for research money
2004
- 13th National Family Conference, Kansas City, Missouri highest attendance to date
- National headquarters moves to a larger office space
- FIRST receives first bequest
- FIRST achieves $100,000 in the first year of a fundraising campaign for research
2005
- Online educational modules are donated and published on the website
- New DVD is produced featuring teens living with ichthyosis
- FIRST receives 2nd & 3rd Gold Triangle Awards from the American Academy of Dermatology for the Education Modules for Healthcare Professionals on its website and for Teen DVD, “Living with Ichthyosis”
2006
- FIRST launches its own research grant program
- Founders, Mary Williams & Peter Elias, are honored at testimonial dinner
- 14th National Family Conference, Atlanta, Georgia
2007
- 4 year strategic plan is adopted, top priorities include tele-medicine project, clinical scholar program, new data-base management system, new website
2008
- 15th National Family Conference, Chicago, IL
- FIRST receives 4th Gold Triangle Award from the American Academy of Dermatology for the 2008 National Family Conference
- FIRST produces new DVD, The FIRST Story
2009
- FIRST launches a facebook page
2010
- FIRST launches new logo and new color scheme
- New website with new URL firstskinfoundation.org
- FIRST launches a YouTube page
- FIRST launches Tele-Ichthyosis Website
- 16th National Family Conference, Orlando, FL
- FIRST hosts International Frontiers in Ichthyosis Research Meeting