FXTAS Clinics

Clinics Specializing in the Treatment of Fragile X-Associated Tremor/Ataxia Syndrome

FXTAS clinics comprise doctors (primarily neurologists and movement disorder specialists), therapists, researchers, and other specialists who treat FXTAS by utilizing the best available scientific knowledge about the known causes of FXTAS. While there is currently no cure for FXTAS, specialists may be able to lessen the severity and slow the progression of symptoms.

Contacting a Clinic: Please feel free to contact the clinic directly or contact us here at the National Fragile X Foundation for guidance on choosing the most appropriate clinic for your needs.

Also see: U.S. Fragile X Syndrome Clinics | International Clinics

U.S. FXTAS Treatment and Research Clinics

The following institutions are NFXF International FXTAS Consortium (IFC) members.

AURORA, COLORADO, USA

(Greater Denver area)
UC Health
UCHealth Neuroscience Center
1635 Aurora Court Anschutz Outpatient Pavilion, 4th Floor
Aurora, CO 80045

Visit Online
UCHealth Neurosciences Center »

Premutation Carrier Clinic (cuanshutz.edu) »

Contact
p (720) 848-2080
f (720) 848-2106
e MARRISA.LAFRENIERE@CUANSCHUTZ.EDU

Medical Director
Emily Forbes, DO

Clinical Coordinator
Marrisa LaFreniere, CGC

ATLANTA, GEORGIA, USA

Emory University School of Medicine, Dept. of Human Genetics
Stephen T. Warren National Fragile X Center at Emory
1462 Clifton Road, Suite 300
Atlanta, GA 30322

Visit Online
National Fragile X Center at Emory »

Contact
p (404) 778-8478
e lisa.shubeck@emory.edu

Medical Director
Laura Scorr, MD

Clinic Coordinator
Lisa Shubeck

CHICAGO, ILLINOIS, USA

Rush University
Rush University FXTAS Clinic
1725 West Harrison, Suite 755
Chicago, IL 60612

Visit Online
Rush University »
Rush University FXTAS Clinic »

Contact
p (312) 563-2900
f (312) 563-2124

Medical Director
Deborah Hall, MD, PhD »

ANN ARBOR, MICHIGAN, USA

University of Michigan
The University of Michigan Fragile X Clinic
4260 Plymouth Road
Ann Arbor, MI 48109

Visit Online
University of Michigan »
University of Michigan Fragile X Clinic »

Contact
p (734) 764-6831
e omjessic@med.umich.edu

Clinic Coordinator
Jessica O’Shea, MS, LCGC

Medical Director
Peter K. Todd, MD, PhD

NEW YORK, NEW YORK, USA

Icahn School of Medicine at Mount Sinai
Fragile X Spectrum Disorder Clinic
1428 Madison Ave.
Atran Building, 1st Floor
New York, NY 10029

Visit Online
Mount Sinai »
Fragile X Spectrum Disorder Clinic »

Contact
p (212) 241-6947
f (212) 241-6947
e christi.flores@mssm.edu

Medical Director
Reymundo Lozano MS, MD

Clinical Coordinator
Christy Flores

BOCA RATON, MIAMI, FLORIDA, USA

University of Miami
Miller School of Medicine
1489 West Palmetto Park Rd
Suite 400
Boca Raton, FL 33486

1150 NW 14th Street
Suite 609
Miami, FL 33136

Visit Online
U Miami Health »

Contact
Roxanna Bustamante
p (305)243-3100
e Rbustamante@med.miami.edu

Clinical Coordinator
Silvia Vargas Parra, CRC

Medical Director
Henry Moore, MD

Medical Co-Director
Matthew Chan Feldman, MD

Genetic Counselor
Rena Pressman, GCG

Research-Only Clinics

Clinics designated as research-only exist exclusively to study potential interventions for FXTAS and patients are only accepted if they meet specific research criteria. While research patients may receive treatment as part of their participation in a research project, patients must confirm the details of participating with the researchers.

SACRAMENTO, CALIFORNIA, USA

UC Davis MIND Institute
Fragile X Research and Treatment Center
2823 50th Street
Sacramento, CA 95817

Visit Online
UC Davis MIND Institute »
Fragile X Research and Treatment Center »
Genotype-Phenotype Relationships in Fragile X Families »

We are recruiting males and females with the premutation, ages 55-85, who are having symptoms of FXTAS.

Contact
p (916) 703-0472
e ersantos@ucdavis.edu

Medical Director
Randi Hagerman, MD

Clinic Coordinator
Ellery Santos

International Treatment and Research Clinics

Please be aware that clinics outside the U.S. operate under different rules, regulations, and cultural norms, and services may be provided differently than in the U.S. However, the IFC’s Task Force has ensured that each of the member clinics meets the IFC’s minimum standard of having available medical and medication evaluation, prescribing, monitoring, and genetic counseling.

CAUFIELD, AUSTRALIA

Balance Disorders and Ataxia Clinic
Royal Victorian Eye and Ear Hospital
32 Gisborne Street
Level 1, Blue Wing
East Melbourne
VIC 3002 Australia

Contact
p +613 9929 8270
e Clinic.E@eyeandear.org.au

Head of Service
Dr. David Szmulewicz