Information about rare neurodegenerative disorders

Clinical trials

March 2nd, 2015 | Posted by cbgd6278 in medical trials | research | studies | Trials - (Comments Off)

University of California, San Francisco  is sponsoring a study to determine the safety and tolerability of TPI 287. They are currently seeking applicants.  For more info:

Safety Study of TPI-287 to Treat CBS and PSP (TPI-287-4RT)

Clinical Trials

January 20th, 2014 | Posted by cbgd6278 in medical trials | research - (Comments Off)

Other  organizations to contact about clinical trials  below. Although, I have posted information about clinical trials and  or support, I think it gets lost on this site.

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
Danbury, CT   06810 External link
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
CUREPSP (Foundation for PSP|CBD and Related Brain Diseases)
30 E. Padonia Road, Ste. 201
Timonium, MD   21093 External link
Tel: 410-785-7004 800-457-4777
Fax: 410-785-7009
Association for Frontotemporal Degeneration (AFTD)
Radnor Station Building #2 Suite 320
290 King of Prussia Road
Radnor, PA   19087 External link
Tel: 267-514-7221 866-507-7222

I stumbled across a medical research looking for volunteers to test alternative  treatments for CBGD and PSP. Since therapies used for Parkinsons have little or no impact on CBGD and PSP, the focus here is to find something that will alleviate  symptoms.

For more information:

Noninvasive Cortical Stimulation (rTMS) for Motor and Non-Motor Features of Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD