ATAXIA Resources

Resources

LOCAL SUPPORT

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
Department of Neurology Hereditary Ataxia Program
601 Elmwood Ave Box 673
Rochester, NY 14642

Phone:(585) 341 – 7500
To learn more: Visit the Website

Alex Paciorkowski, M.D.
Director of Hereditary Ataxia Program

Erika Augustine, MD
Neurologist and Movement Disorder Specialist

NATIONAL SUPPORT

The National Ataxia Foundation (NAF) is dedicated to improving the lives of persons affected by ataxia through support, education, and research.

National Ataxia Foundation
2600 Fernbrook Lane Suite 119
Minneapolis, MN 55447-4752

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

NINDS Ataxias and Cerebellar or Spinocerebellar Degeneration Information Page

ATAXIA PATIENT REGISTRY

Coordination of Rare Diseases at Sanford – CoRDS
A program based at Sanford Research, a not-for-profit research institution, CoRDS is a centralized international patient registry for all rare diseases. The goal of the CoRDS registry is to connect as many patients and researchers as possible to help advance treatments and cures for rare diseases. The CoRDS registry is free for patients to enroll and for researchers to access. We work with patient advocacy groups, individuals, and researchers to coordi nate the advancement of research into the 7,000 rare diseases

To learn more or become part of the registry click here 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.

Rochester Ataxia Foundation helped contribute to the advancement of Dr. Fogel’s research with his identification and analysis of a novel causative mutation for one Rochester family – there are more samples from Rochester to be analyzed!

RAF continues to support this very important research and has donated over $50K!

To learn more about Dr. Fogel’s research visit: http://fogellab.neurology.ucla.edu

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