about
THE SPATA
FOUNDATION
Founded by parents of a child with SPATA5L1 Disorder, The SPATA Foundation is dedicated to advocating, educating, and funding research for SPATA5(AFG2A) and SPATA5L1(AFG2B) Related Disorders.
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Although different genes, mutations in SPATA5 and SPATA5L1 results in similar symptoms, and in some cases, have unfortunately taken lives. The founders decided it was in the best interest of those affected to unite the two communities.
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Our goals are to advocate for research, educate the public on the disorders, and fund research to better understand the function of the genes and hopefully a treatment.
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We also strive to provide community and support to SPATA5 and SPATA5L1 families across the world.
OUR MISSION
The SPATA Foundation's Mission is to advocate, educate, and drive research for SPATA5 and SPATA5L1 Related Disorders.
OUR VISION
For doctors and researchers all over the world to be knowledgable of SPATA5 and SPATA5L1 and be a place of support for all those that have been and will be diagnosed with SPATA5 and SPATA5L1 Disorders
our team
Mariah George
President & Founder
Hana Deck
Board Member
Paige Orent
Board Member
MEDICAL & SCIENTIFIC
advisory board
Michael Buszczak, PhD
Professor
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Dept. of Molecular Biology
UT Southwestern
Tapas Mukherjee, PhD
Postdoctoral Fellow
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Dept. of Immunology
University of Toronto
Michael Kruer, MD
Program Director Pediatric Movement Disorders
Barrow Neurological Institute
Phoenix Children's Hospital
Barbara Vona, PhD
Principle Investigator
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Institute of Human Genetics, Institute for Auditory Neuroscience
University Medical Center Göttingen
DIAGNOSED SPATA5 & SPATA5L1 CASES
around the world
RED indicates SPATA5 families
BLUE indicates SPATA5L1 families
Last Updated: October 29, 2024
