Our Journey Through Time
From a small group of families seeking answers to an international community making a difference - this is our story.
1996
FSIG FOUNDED
Families came together to create one of the first dedicated support organizations for Fabry disease. At the persistent urging of Robert Desnick, MD, PhD FSIG was co-formed by Jack, Debra, and Kathy Johnson.
1997
FIRST NEWSLETTER & WEBSITE
In April the first ever newsletter is published for those affected by Fabry disease. A total of 100 copies were produced. The first website for the Fabry patient community is also launched.
2000
OFFICIALLY RECOGNIZED
FSIG becomes an IRS recognized 501(c)(3) nonprofit organization.
2002
EUROPEAN APPROVED MEDICINE
European Medicines Agency (EMA) approves Fabrazyme and Replagal.
2003
FDA APPROVED MEDICINE
Two years of community letters sent to the FDA and a meeting with the FDA influences product labeling. The FDA approves Fabrazyme.
2006-2007
NEWBORN SCREENING WORK BEGINS
Newborn screening assay validation efforts with Dawn Laney. Filed for Fabry to be included in the RUSP.
2009
DRUG SHORTAGE
A shortage of Fabrazyme cause patients to seek other treatments.
2010
MORE WORK WITH NEWBORN SCREENING
Joined the Missouri Newborn Screening Standing Committee. Worked with the Genetic Alliance on the development of A Guide to Family Health History and A Guide for Understanding Genetic and Health.
2011
SUPPORT BEYOND CARE
FSIG began a new limited financial assistance program called RAFT now called Fabry Assist. Since then, 751 assistance awards have been provided averaging $478.60.
2012
EYES ON FABRY
A new program for optometrists started called Eyes on Fabry. Jack traveled state by state in his car carrying the slit lamp so doctors could learn what whorling looked like in Fabry.
2013
LATE ONSET TRIALS
The medical specialists at Emory in Atlanta began a new study on newborn screening for variants with late onset.
2015
EYES ON FABRY
GGGGGGGGGGGGG
2018
TESTING FOR TOTS BEGIN
Testing for Tots was started by Brian and Tia Jones and now employs a part-time newborn screening associate to advocate for Fabry on the state level.
Jack receives the WORLDSymposium PAL Award!
2020
FSIG PIVOTS TO VIRTUAL
During 2020 and 2021, FSIG pivots to all virtual meetings and conferences and hires their first remote employee.
2022
FSIG JOINS NKF AT THE FDA
FSIG worked with the National Kidney Foundation on The Voice of the Patient Report Externally Led Patient-Focused Drug Development meeting on Fabry.
FSIG's first ever Fabry Women's Summit held in Charlotte, North Carolina with over 50 Fabry females.
2023
A BIG DEAL
Jack receives the Sanofi TORCH Award!
2024
FSIG JOINS NKF AT THE FDA
FSIG worked with the National Kidney Foundation on The Voice of the Patient Report Externally Led Patient-Focused Drug Development meeting on Fabry.
2025
A BIG DEAL
Jack receives the Sanofi TORCH Award!
2026
30 YEARS OF HOPE
FSIG worked with the National Kidney Foundation on The Voice of the Patient Report Externally Led Patient-Focused Drug Development meeting on Fabry.
"FSIG gave us more than information- it gave us a community and hope for a better tomorrow."
-FSIG Member
5,000+
Individuals & Families Supported
60+
Countries Reached
30
Years of Hope
