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NAF announces selections for first round of Ataxia Centers of Excellence. LEARN MORE!

National Ataxia Foundation

2023 AAC


Woman in clinic drawing blood from a man.

Getting Involved with Ataxia Research

Taking part in research is one way to help accelerate the development of treatments for ataxia. Some people like playing an active role in improving our understanding of ataxia by participating in clinical trials and other research studies. However, participating in research is a deeply personal choice. There are a Read More…

Advancing Research by Joining the CoRDS Patient Registry

The Coordination of Rare Diseases at Sanford (CoRDS) coordinates the advancement of research into 7,000 rare diseases via data sharing and study recruitment.  CoRDS works with advocacy groups such as the National Ataxia Foundation, individuals who have a diagnosis of any form of Ataxia, and researchers who are studying various Read More…

ICAR Recap Friday Morning: Recent Discoveries and Flash Talks

Written by Dr. Ronald BuijsenEdited by Celeste Suart The Late Breaking Session presented data on new insights into FA disease mechanisms and positive results in an FA omaveloxolone clinical trial, a novel SCA5 screening platform to identify new drug targets & the discovery of a novel gene causing SCA50. During Read More…

ICAR Recap Thursday Morning: The Entrepreneurs of New Treatments

Written by Dr. Jorge Diogo Da Silva, with notes from Sarah Donofrio and Celeste SuartEdited by Hayley McLoughlin From drugs and gene therapy, to electrical current and exercise programs: how researchers are becoming more innovative in the search for new treatments, in the lab models to test them, and in Read More…

ICAR Recap Wednesday Afternoon: Cerebellum, Therapy Development & Imaging

Written by Dr. Hannah Shorrock, with notes from Dr. Amy Smith-Dijak and Celeste SuartEdited by Celeste Suart Understanding non-motor functions and factors that govern vulnerability in the cerebellum will help to inform preclinical therapy development, from CRISPR to small molecules, and provides important considerations for imaging studies. Together, these research Read More…

ICAR Recap Wednesday Morning: Biomarkers & Neurons

Written by Sarah Donofrio, with notes from Dr. Hayley McLoughlinEdited by Hayley McLoughlin On Wednesday morning, ICAR attendees heard talks covering a range of topics, all  focused on research about the mechanisms and biomarkers of ataxia. Wednesday morning began with the Disease Mechanisms Plenary. The session was kicked off by Read More…

ICAR Recap Tuesday Afternoon: Partnership & Understanding Ataxia

Written by Dr. Hannah ShorrockEdited by Dr. Hayley McLoughlin Early involvement of patients in clinical trial design, developing innovative imaging techniques and leveraging a clear understanding of disease mechanisms will pave the way for clinical trial success in the ataxias. As the field of ataxia research moves towards clinical trials, Read More…

The Difference Between Observational and Interventional Studies

There are two main categories of human clinical trials: (1) observational studies, and 2) interventional studies. Both types of clinical studies are essential to developing new therapies for rare diseases like Ataxia. There are multiple trials taking place right now for Ataxia. In this PrepRARE article, learn a little more Read More…

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