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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…
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…
Written by Dr. Amy Smith-Dijak, with notes from Dr. Jorge Diogo Da Silva and Celeste SuartEdited by Hayley McLoughlin From debates about studying therapies, to training with an important clinical tool, to clinical trials hot off the presses, Thursday afternoon at ICAR was all about doing our best to treat Read More…
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…
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…
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…
Written by Celeste Suart Edited by Hayley McLoughlin The first-ever International Congress for Ataxia Research was held in November 2022. This meeting allowed researchers to catch up on the latest ataxia discoveries and connect with colleagues around the globe. This series of Conference Recaps will share the highlights of the Read More…
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…
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…
DISCLAIMER: The information provided in this article is for informational use only. NAF encourages all readers to consult with their primary care provider, neurologist, or other healthcare provider about any advice mentioned. Deciding whether to donate cerebral spinal fluid (CSF) is a very personal, but impactful decision. In the video Read More…
