In January 2014 URMC launched the first Hereditary Ataxia Program in the region which offers a monthly coordinated care clinic model for patients with genetic forms of ataxia. Rochester Ataxia Foundation advocated and financially helps to support this much needed clinic for patients and families challenged with ataxia.
University of Rochester Medical Center
Alex Paciorkowski, M.D.
Erika Augustine, MD
Every year in December, Rochestarians and others around the country participate in donating to Rochester area nonprofit causes. The Rochester Ataxia Foundation is a proud partner, and you can find our listing here: https://roctheday.org/Causes-to-Support/Rochester-Ataxia-Foundation
The National Ataxia Foundation (NAF) is dedicated to improving the lives of persons affected by ataxia through support, education, and research.
National Ataxia Foundation
NATIONAL INSTITUTES OF HEALTH (NIH) – RARE DISEASES RESEARCH
National Center for Advancing Translational Sciences (NCATS) Office of Rare Diseases Research (ORDR)
To learn more about the important initiative to advance research as part of the Rare Diseases Act of 2002 --- go to the website link: http://rarediseases.info.nih.gov
ATAXIA PATIENT REGISTRY
Coordination of Rare Diseases at Sanford – CoRDS
UCLA - ATAXIA AND NEUROGENETICS PROGRAM
Dr. Fogel is a respected researcher at UCLA Department of Neurology - Ataxia and Neurogenetics Program. Dr. Fogel is conducting research directly related to ataxia using various methods involving next-generation sequencing.