Testing for Tots
We envision a Fabry disease community empowered to improve quality of life through early diagnosis.
Our Mission
Advocate
Advocate on the state and federal levels by meeting with your legislator and writing patient testimonies
Partner
Partner and serve on local and state medical advisory committees
Support
Help support diagnostic innovation and patient proliferation
Research
Help fund research that continues to prove benefits of early Fabry diagnosis
Our Team
Brian Jones
Brian, originally from Simpsonville, SC is a patient with Fabry disease. He currently is a practicing Nephrologist in Asheville, NC and Co-Founder of Testing for Tots. He is passionate about political activism and serves as the Treasurer of the Lysosomal Storage Disease (LSD) Coalition, which partners with additional LSD’s to advocate for newborn screening at a state level.
Tia Jones
Tia is originally from Bristol, TN and the Chief Improvement Officer at PHX Holdings, based in Atlanta, GA. She became aware of Fabry when her husband was diagnosed in 2018. She is the Co-Founder of Testing for Tots and is passionate about families receiving critical early screening of Fabry to prolong a healthy lifestyle. She leads our annual fundraiser, A Tasting for Testing for Tots and enjoys creative cooking to lower sodium for her family’s diet.
Rachelen Varghese
Rachelen joined the Testing for Tots team as Newborn Screening Coordinator in February 2022. She uses her research background to lead our partnerships with State Advisory Committees to work through medical boards for Fabry newborn screening. She also is the creative director for our social media leading patient education through Face of Fabry, Newborn Screening Awareness Month, and other fun ways to connect and improve the quality of life for the Fabry community.
August 16, 2023 by Rachelen
Our Newborn Screening Coordinator, Rachelen Varghese, presented to the Newborn Screening and Genetics committee in Nebraska...
September 15, 2023 by Rachelen
Testing for Tots founders, Dr Brian and Mrs Tia Jones, are delighted to announce the formation of The Lysosomal Storage Disease Advocacy Coalition (LSDAC). This non-profit coalition...
September 1, 2023 by Rachelen
This September marks the 50th anniversary of newborn screening. Here at the Testing for Tots program, we believe that early detection, diagnosis and intervention can prevent death or disability and enable children...
