Our Focus

The Brain Support Network (BSN) is a non-profit organization focused on the needs of families dealing with four neurodegenerative disorders, collectively known as the "Atypical Parkinsonian disorders": Progressive Supranuclear Palsy (PSP), Multiple System Atrophy (MSA), Corticobasal Syndrome/Degeneration (CBS/CBD), and Dementia with Lewy Bodies (DLB or LDB).

An initial diagnosis of these distinct disorders is often simply "Atypical Parkinsonism" or "Parkinson's Plus". As more symptoms appear, the initial diagnosis is often refined to one of these four disorders. While sharing many symptoms of—and often confused with—the more-common Parkinson’s or Alzheimer’s diseases, these four disorders have distinct brain pathologies, no cures, and virtually no treatments.

BSN has three missions.

First, we convene semi-quarterly caregiver support group meetings in Northern California. These meetings are for family caregivers only. They allow caregivers to meet with others who have lived this experience and can provide information, practical insights, and empathy. Typically, 20% of attendees are volunteers who have followed a loved-one through the inevitable decline and death that these disorders bring. These volunteers help caregivers in a way that medical practitioners cannot, sharing in-the-trenches experience and advice.

Second, we promote and facilitate brain donation for individuals diagnosed with any neurological disorder. 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), or vascular dementia. Brain Support Network has helped 270 families accomplish brain donation in the US. Of these families, half received a confirmed diagnosis that was different than the clinical diagnosis.

Third, Brain Support Network tracks research into these disorders and maintains relationships with most neurologists specializing in these disorders in Northern California. We maintain a 400-name email list of caregivers and patients, organized by disorder. We send emails about upcoming events, research programs, relevant findings, and articles on caregiving. We never share our email list, even with affiliated groups.

Learn more about Brain Support Network by downloading our 2-page tri-fold brochure, suitable for color or black-and-white printing.

Brain Donation

Brain Support Network has helped over 270 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
(1) to obtain a confirmed diagnosis and (2) 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. The average cost to families in other parts of the US is about $800. These are fees paid directly to the pathology specialist 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 270 families we have helped, most brains were donated to the Mayo Clinic (largely to Jacksonville, some to Rochester). We‘ve also helped people donate brain tissue to UCSF, Columbia, etc. We have two 8.5 x 11-inch tri-fold brochures describing brain donation. These brochures are suitable for color or black-and-white printing. Download our two brain donation brochures:

For those challenged by Alzheimer's, Lewy Body Dementia, and other dementia types.

For those challenged by Parkinson's and atypical parkinsonism (PSP, CBD, MSA, and LBD).

Contact us to learn more. If possible, please contact us before death is imminent. Remember that research protocols require that the brain be removed within 24 hours of death. Contacting us sooner is always better!

Resources: Disorder Sheets

The Brain Support Network team regularly reviews resources made available by research organizations and disease interest groups. Most of these resources are available on the Web. Last updated in September 2015, these 2-page PDF documents are available for four disorders:

Resource sheet for Progressive Supranuclear Palsy (PSP)

Resource sheet for Multiple System Atrophy (MSA)

Resource sheet for Corticobasal Degeneration (CBD)

Resource sheet for Lewy Body Dementia (LBD)

Resources: Articles

Brain Support Network recently co-authored the Summer 2015 issue of the "Partners in FTD Care" newsletter, published by The Association for Frontotemporal Degeneration. This issue is focused on PSP, categorized by some researchers as a subtype of FTD, and specifically addresses falls and dysphagia. Though the newsletter is for healthcare professionals and focuses on PSP, we think everyone dealing with an atypical parkinsonism disorder will find this publication of interest.

Events

Brain Support Network sponsors various events valuable to families dealing with neurological disorders. When these events have been recorded, videos are generally available for streaming.

CurePSP Family Conference, Friday/Saturday, February 19/20, 2016
This event, co-sponsored by CurePSP and Brain Support Network, will be important for families dealing with PSP, MSA, and CBD. The event will probably be held in a hotel near San Francisco International Airport (SFO) and is expected to be priced at $25/attendee to cover the cost of food. Mark your calendars!

Dementia and Alzheimer's Caregiver Conference, November 2015
One hundred fifty (150) people attended this event organized by BSN in Santa Rosa, California. Speakers reviewed the spectrum of dementia diseases (e.g. Alzheimer’s, Lewy Body Dementia) and shared techniques for quality care. Click here for the event agenda and the event video.

Parkinson's and Atypical Parkinsonism Caregiver Symposium, July 2014
Organized with "Stanford University School of Medicine". This event was not video recorded.

PSP and CBD Research Update, February 2014
Organized with "UCSF Memory and Aging Clinic". See the video on the UCSF Youtube channel.

Atypical Parkinsonism Symposium, October 2012
Organized with "Stanford University School of Medicine". See the video on the Stanford APDA Youtube channel.

Support Groups

Brain Support Network (BSN) began in 2004 as a support group for atypical parkinsonism operating in Northern California. Today, BSN has over 350 members on our email lists, and attendance of 20-30 caregivers at our caregiver-only support group meetings in San Mateo, California.

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 convene nine meetings every year. 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 Individuals 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. Two LBD-only (-mostly) caregiver groups meeting in Gold River and Santa Rosa. Download the list here.

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! Check out these links on the Stanford University web site:

Parkinson's Disease support groups in Northern California

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

Dementia caregiver support groups in Northern California

General caregiver-only support groups in San Francisco Bay Area

Want other options? Don't live in Northern California? Download our list of telephone-based support groups, online support groups, and other support groups--both in Northern California and beyond. Download the Support Groups list.

Contact Us

Point of Contact: Robin Riddle

robin.riddle@brainsupportnetwork.org

PO Box 7264, Menlo Park, CA 94026   /   +1 650-814-0848