Our Focus

Brain Support Network is focused on education and information for families dealing with four neurodegenerative disorders — Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA), Dementia with Lewy Bodies (DLB), and Corticobasal Syndrome/Degeneration (CBS/CBD) — or a general diagnosis of "atypical parkinsonism" or "Parkinson's Plus."

A second mission is to promote and facilitate brain donation for all neurological disorders. At present, post-mortem brain tissue analysis is the ONLY way to confirm a diagnosis of PSP, MSA, DLB, CBD, Alzheimer's Disease (AD), Parkinson's Disease (PD), Frontotemporal Dementia (FTD), vascular dementia, etc. Brain Support Network has helped 125 families accomplish brain donation in the US. Of these families, half received a confirmed diagnosis that was different than the clinical diagnosis.

Brain Donation

Brain Support Network has helped over 125 families in the US successfully accomplish brain donation. We’d like to help your family too.

What are the reasons to donate your brain or a loved one’s brain? The two key reasons are to obtain a confirmed diagnosis and to support research into the causes, treatments, and cures for neurodegenerative disorders.

At least half of the families we’ve assisted have been surprised by the confirmed diagnosis. Depending on which neurodegenerative disorder someone is diagnosed with, the diagnostic accuracy can vary from 22% (“pure DLB”) to 86% (Richardson’s Syndrome type of PSP). The only way to obtain a confirmed diagnosis is through post-mortem tissue examination. From the donor’s viewpoint, this knowledge can bring peace of mind to children and grandchildren.

While the confirmed diagnosis is of primary importance to many families, other families believe that generously enabling research is the ideal way to turn a sad situation into a positive. Nearly all families report a wide sense of satisfaction at having finally done something to fight back against neurodegeneration. Some feel proud of their loved one’s generosity to the larger community.

In California, the average cost to families to accomplish brain donation is about $1K. These are fees paid directly to the pathology technician and funeral home. For a few disorders (PSP, CBD, MSA), a grant up to $750 is available to families through a non-profit organization,
upon submission of receipts.

Of the 125 families we have helped, brains were donated to the Mayo Clinic (mostly Jacksonville, a few to Rochester). We‘ve also helped people donate brain tissue to UCSF, Columbia, etc.

Please contact us to learn more – before death is imminent! And the sooner the better.

Our Reach

Northern California

Brain Support Network, the new name for the atypical parkinsonism support group operating in Northern California since 2004, has over 350 members on our email lists, and attendance of 20-30 caregivers at our caregiver-only support group meetings in San Mateo.

For Caregivers: If you have a spouse, parent, sibling, or friend dealing with

PSP - progressive supranuclear palsy
MSA - multiple system atrophy
CBD - corticobasal degeneration
LBD - Lewy body dementia

or a general diagnosis of “atypical parkinsonism,” “Parkinson’s Plus,”or “atypical PD,” you are welcome to join our caregiver support group meetings in San Mateo. Caregivers come from as far away as Lakeport and Monterey to attend our meetings. Attendees realize that we are not alone, and we can speak openly with others experiencing many of the same issues.

Caregiver-only support group meetings are held Sundays, 5-7pm. We have nine meetings scheduled for 2013. Let us know if you’d like to be added to the meeting reminder email list. We also offer phone or email support, if you are unable to leave home.

For Those with a PSP, MSA, CBD, or LBD Diagnosis, and For Caregivers: You are invited to join our email list of the latest research and treatment on PSP, MSA, CBD or LBD, newspaper articles about people challenged by these disorders, lecture notes, links to important online videos and other resources, caregiving tips, and info about Northern California events that may be of interest! We try to stay up to date so you don’t have to spend precious time doing research and reading. Let us know which list you’d like to join – PSP, MSA, CBD, or LBD.

Any other in-person groups in Northern California? Besides our PSP, CBD, MSA, and LBD caregiver-only group that meets in San Mateo, there are only three other in-person support groups in Northern California and none includes all four atypical parkinsonism disorders. There are two LBD-only caregiver groups (meeting in Gold River and Santa Rosa) and a PSP, CBD, and MSA family group (meeting in Sacramento).

We helped put on a successful Atypical Parkinsonism Symposium in October 2012, with 180 attendees, mostly from the Bay Area. As a follow-on effort to that symposium, Brain Support Network will help establish other support group meetings in Northern California, where we can find group co-leaders, a meeting location, and sufficient interest. If you are interested in this effort, please contact us.

What about groups focused on other disorders? It's certainly worth trying out a Parkinson's Disease support group or an Alzheimer's Disease support group!

Parkinson's Disease support groups in Northern California

Parkinson's Disease caregiver-only support groups in Northern California

Alzheimer's Disease support groups in Northern California (search for "category"=support groups)

General caregiver-only support groups in San Francisco Bay Area

What if you live outside of Northern California? See our webpage on telephone-based and online support groups.

Support Groups

We know that not everyone lives in Northern California. Download our list of telephone-based support groups, online support groups, and other support resources.

Download the Support Groups list