Just out in Cerebellum. SCA27B - a clinical diagnosis confirmed by gene testing. 90% success rate if onset >45 years, isolated downbeat nystagmus (DBN), DBN with ataxia, or dominant ataxia with episodic worsening and exacerbation by caffeine link.springer.com/10.1007/s12311…

CCAS / Schmahmann scale: false positives reduced, 4.7% to 1.2% by 2nd try at forward / reverse digit span. 38% with cerebellar disorders remain Definite CCAS. Scores decline in older controls. secure-web.cisco.com/1pfMzSoReT0u9b… National Ataxia Foundation American Neuropsychiatric Association (ANPA) Society for Neuroscience (SfN) Ataxia UK Mass General Brigham Research

At the National Ataxia Foundation New England Walk ‘n Roll today with patients, families and friends dealing with cerebellar disorders. Great turn-out, inspiring spirit and camaraderie. I shared brief updates on advances in patient care, research, and educational initiatives in the ataxias.

Please make good on this promise Dr. Marty Makary. Ensure U.S. FDA approves troriluzole. Spinocerebellar patients / families are deteriorating, dying. You can stop this. FDA is failing them. The med is safe. Patients stabilize and improve. Real world evidence confirms. National Ataxia Foundation

I just provided expert opinion to the U.S. FDA committee on Biohaven’s troriluzole. This is going to have to escalate to News from RFK Jr. HHS and Marty Makary MD, MPH or a senate hearing. FDA is stonewalling a drug that is safe and effective for the US population of National Ataxia Foundation

Check out this forwarded post. It resonates. In my 3 KOL appearances before the neurology committee of the U.S. FDA Dr. Marty Makary about troriluzole, have been stunned by their ignorance regarding ataxia, compounded by their arrogance and callous indifference. FDA is broken.

International collaboration showcased at the Clinical Trials in Ataxia (CTAX) meeting in Amsterdam. Clinicians, researchers, advocacy groups, pharma, regulators from US and Europe brainstorming about ways to treat and cure the neurodegenerative ataxias. National Ataxia Foundation FA Research Alliance