1996
FSIG Founded
Families came together to create one of the first dedicated support organizations for Fabry disease.
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.
2002
Consistentency
1st Letters to the Food and Drug Administration (FDA)
2003
US Approved Medicine
The second group of Community letters sent to the FDA. A meeting with the FDA influences product labeling. The FDA approves Fabrazyme.
2006
Newborn Work Begins
Newborn screening assay validation efforts with Dawn Laney.
2007
RUSP Submission
Submitted Fabry for the RUSP.
2009
Drug Shortage
A shortage of Fabrazyme cause patients to seek other treatments.
2010
More Work for NBS
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
The medical specialists at Emory in Atlanta began a new study on newborn screening for variants with late onset.
2015
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2018
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.
2018
Jack receives the WORLDSymposium PAL Award!
2022
FSIG worked with the National Kidney Foundation on The Voice of the Patient Report Externally Led Patient-Focused Drug Development meeting on Fabry.
2023
The Lysosomal Storage Disorder Advocacy Coalition was formed.
2023
Jack receives the Sanofi TORCH Award!
2024
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