Information about rare neurodegenerative disorders
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About This Site

December 5th, 2011 | Posted by cbgd6278 in research - (12 Comments)

Reason for this Site:

What is CBGD? Cortical Basal Ganglionic Degeneration is a little known neurodegenerative disease in the Parkinson’s family which my father was diagnosed with in 2001 by the Mayo Clinic . His family doctor had thrown up his hands and sent him there since he was unable to determine a prognosis for his symptoms. Our search for answers and a possible cure yielded very little information and over the years we watched as the disease took a toll on my father’s body. Ultimately, he passed away in 2007 from complications of the disease.

My goal is for others to use this site as a resource to help those affected by diseases like CBGD, or PSP, and Parkinson’s. I chose to do a site to gather comprehensive information on  CBGD because it was hard for us to find any information about the disease. Through several different resources we found treatments and therapies to make my father as comfortable as possible since there is no cure. In the meantime, science continues to do research to find an effective treatment and cure of CBGD. There are many questions that remain unanswered but I hope that together we will find them soon.

Brain Support Network/

November 4th, 2017 | Posted by cbgd6278 in Support - (Comments Off on Brain Support Network/)

For more information and support on CBD  check out The Brain Support Network. They have a downloadable resource list

Corticobasal Degeneration (CBD)

Clinical Trial: NCT02132052/

November 3rd, 2017 | Posted by cbgd6278 in Cbd clinical trial | MSA clinical trial | Parkinson's clinical trial | Trials - (Comments Off on Clinical Trial: NCT02132052/)

Recruiting volunteers:

Researchers hypothesize that specific characteristics of each cognitive and motor condition that can be defined using brains scans.

http://inclinicaltrials.com/parkinson-disease/NCT02132052/

PSP/CBD Research Update and Family Conference

August 10th, 2017 | Posted by cbgd6278 in Caregivers | CBGD | conference | Supranuclear Palsy - (Comments Off on PSP/CBD Research Update and Family Conference)

 

Conference hosted by the Brain Support Network for families coping with CBGD and Supranuclear Palsy.

Saturday, October 28, 2017
Crowne Plaza Foster City (San Francisco Bay Area)

For more information:
https://www.brainsupportnetwork.org/save-the-date-saturday-october-28-pspcbd-research-update-and-family-conference-foster-city-san-francisco-bay-area/

Clinical Trial: NCT03076671

August 10th, 2017 | Posted by cbgd6278 in medical trials - (Comments Off on Clinical Trial: NCT03076671)

Clinical Trial NCT03076671 is seeking volunteers

Clinical Trial Summary

This is a two-center (University of Colorado, University of California San Francisco) community-based comparative effectiveness study of outpatient palliative care for Parkinson’s disease (PD) and related disorders (progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), multiple systems atrophy (MSA), Lewy Body Dementia (LBD). It will utilize a randomized stepped-wedge design to compare patient and caregiver outcomes between usual care in the community versus usual care augmented by palliative training and telemedicine support to provide other resources (e.g. social work)

 

For more information :

http://inclinicaltrials.com/parkinson-disease/NCT03076671/

Organizations for Support

August 10th, 2017 | Posted by cbgd6278 in Uncategorized - (Comments Off on Organizations for Support)

Just a brief list for those seeking/needing some support for CBDG:

Basic Research Fuels Advanced Discovery

November 14th, 2016 | Posted by cbgd6278 in brain | neurodegeneration | research | studies - (Comments Off on Basic Research Fuels Advanced Discovery)

 

“Fundamental cell biology research into neurodegeneration may be the key to accelerating understanding of neurodegenerative and so-called “incurable” diseases such as Alzheimer’s and Parkinson’s.”   Sonia Fernandez

http://www.news.ucsb.edu/2016/017101/basic-research-fuels-advanced-discovery

Alternative treatments?

November 14th, 2016 | Posted by cbgd6278 in alternative treatments | brain | Foods | herbs | research | studies - (Comments Off on Alternative treatments?)

11943448 - ginseng teaSince there is no cure for CBGD, I think there is an urgent need to find some alternative treatments/ therapies for CBGD, PSP. I came across this website: International Journal of Pharmaceutical Sciences and Research.  While studies have shown a promise of utilizing herbs as a treatment, it still is just beyond our reach. Although genetics play a role in neurodegenrative disorders, research has shown that lifestyle/environment may have a hand in it too. I’m posting a link to this article: Herbal Remedies for Neurodegenerative Disorder (Alzheimer’s Disease): A Review

I thought it was an excellent article that provides an interesting overview  of drugs and herbal drugs used to treat  Alzheimers.

Clinical trials

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

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)

Cannabis a treatment for MS?

March 2nd, 2015 | Posted by cbgd6278 in studies - (Comments Off on Cannabis a treatment for MS?)

So its been about a year since my last post and I had debated on taking the site down but decided against it. I  hope the information would be helpful to those  affected by CBDG.  I’m going through some of the comments  and there is one thing I do want to stress for treatments or possible treatments that I discuss on this blog: they are not cures. It is only  to help slow the progression  of the symptoms(if that is possible) and relief from pain. While science continues to make great strides for diseases like Alzheimer’s and Parkinson lets continue to hope that they will discover a treatment  and a cure for CBGD.

On that note, I came across  an article on the use of  cannabis treating Multiple Sclerosis . A study  published by The Canadian Medical Association Journal in 2012 shows that  an extract from marijuana plant  eased stiffness and pain for those diagnosed with Multiple Sclerosis.  It doesn’t slow the progression of MS but it  does seem to give some relief.  To read more about the study: http://www.medicalnewstoday.com/articles/251339.php

cannabis-313051_1280

Clinical Trials

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

http://clinicaltrials.gov/search/term=Corticobasal%20Degeneration

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
orphan@rarediseases.org
http://www.rarediseases.org 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
info@curepsp.org
http://www.curepsp.org 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
info@theaftd.org
http://www.theaftd.org External link
Tel: 267-514-7221 866-507-7222