Brain Support Network cooperates with organizations in related fields, including brain banks, research institutes, and non-profits working to generate awareness, provide education, and find solutions for persons diagnosed with neurological disorders. Many of our partners refer families to us for participation in our local support group and for assistance with brain donation.
National Partners
BSN has many national partners whose operations extend across the United States, and sometimes beyond. Our specific relationship is described below. The scope of BSN’s operations is described here. For example, our brain donation efforts are national.
American Parkinson Disease Association (APDA)
Founded in 1961, the American Parkinson Disease Association (APDA) is the largest grassroots network dedicated to fighting Parkinson’s disease (PD). The APDA and its local partners offer PD support groups, exercise classes, and educational events around the US. Brain Support Network refers those coping with atypical parkinsonism disorders to the APDA to learn about symptoms and treatment through its educational materials. The APDA refers families to Brain Support Network for brain donation information. www.apdaparkinson.org
CurePSP
CurePSP is a non-profit that is dedicated to awareness, education, care, and cure for devastating neurodegenerative diseases such as PSP, CBD, and MSA. CurePSP has funded hundreds of research studies in PSP and CBD. Brain Support Network partnered with CurePSP on many educational events in the San Francisco Bay Area, often along with Stanford’s Movement Disorders Center. Many of CurePSP’s educational materials are listed on BSN’s “Top Resources” sheets for PSP and CBD. CurePSP refers Northern California PSP, CBD, and MSA families to Brain Support Network for support. www.psp.org
Dementia Action Alliance
The Dementia Action Alliance (DAA) USA is a non-profit national advocacy and education organization of people living with dementia, care partners, friends and dementia specialists committed to creating a better country in which to live with dementia. Brain Support Network refers families coping with dementia to DAA to participate in weekly phone-based support group meetings. DAA refers families living with dementia to Brain Support Network for brain donation information. www.daanow.org
FTD Disorders Registry
The FTD Disorders Registry is an online database to collect information from those affected by all types of frontotemporal degeneration: behavioral variant FTD (bvFTD), any one of the primary progressive aphasias (PPA), progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), or FTD with motor neuron disease (also called FTD-ALS). Persons diagnosed, (current/former) caregivers, family, and friends can join and tell your story. Brain Support Network encourages all those affected by FTD to join the registry. The Registry co-hosted a webinar in October 2023 about FTD brain donation. As a partner in the ALLFTD study, BSN spoke at that webinar about brain donation. (Watch BSN’s talk.) The Registry refers FTD families to BSN for brain donation arrangements. www.ftdregistry.org
Michael J. Fox Foundation
The Michael J. Fox Foundation for Parkinson’s Research (MJFF) is dedicated to finding a cure for Parkinson’s disease through an aggressively funded research agenda and to ensuring the development of improved therapies for those living with Parkinson’s today. To speed clinical research, MJFF offers Fox Trial Finder (FTF), an online clinical trial matching tool, which includes studies and a registration option for atypical parkinsonism disorders. Brain Support Network is an MJFF community partner for clinical trial recruitment. MJFF educational resources are available on BSN’s website. www.michaeljfox.org
Mission MSA (previously known as MSA Coalition)
Mission MSA (formerly The MSA Coalition) has been a leading resource on multiple system atrophy for decades. It has funded research on MSA, and provides patient and caregiver support. In the past, Brain Support Network partnered with The MSA Coalition at its national conferences to raise awareness for MSA brain donation. Many of Mission MSA’s educational materials are listed on BSN’s “Top Resources” sheet for MSA. And, Mission MSA refers local MSA families to Brain Support Network for support. www.missionmsa.org
Parkinson’s Foundation
The Parkinson’s Foundation (PF) makes life better for people with Parkinson’s through expert care and research. Brain Support Network refers those coping with atypical parkinsonism disorders to PF to learn about symptoms and caregiving through its educational materials and website. PF refers families to Brain Support Network for brain donation information. www.parkinson.org
Northern California Partners
BSN’s has many partners in Northern California. The specific relationship that we have with each partner is described below. The scope of BSN’s operations is described here. For example, our support group efforts are limited to Northern and Central California.
Family Caregiver Alliance
The mission of the Family Caregiver Alliance is to improve the quality of life for caregivers and those they care for through information, services, and advocacy. Its efforts are focused on the nine counties in the San Francisco Bay Area. Brain Support Network refers our local caregiver group members to Family Caregiver Alliance for caregiver-specific services, including educational workshops and support by a “family consultant.” Family Caregiver Alliance refers LBD, PSP, MSA, and CBD families to Brain Support Network for local support. www.caregiver.org
Stanford Movement Disorders Center
The Stanford Movement Disorders Center (SMDC) offers excellent clinical care for Parkinson’s Disease and other movement disorders. Brain Support Network partnered with the SMDC most recently in June 2025 for a PSP-MSA-CBD Caregiving Symposium. Jointly hosted events in 2024 focused on MSA and PSP/CBD, while an event in late 2023 focused on LBD caregiving. Brain Support Network refers local PSP, CBD, LBD, and MSA families to SMDC for clinical evaluation and research. Several of Stanford’s movement disorder specialists refer atypical parkinsonism families to Brain Support Network for support and resources. med.stanford.edu/neurology/divisions/md.html
Susan and Charles Berghoff Foundation
The Susan and Charles Berghoff Foundation, based in Morgan Hill, is focused on defeating Lewy body dementia. It has funded a fellowship at Stanford University, and offers training for local nurses. Years ago, when co-founder Sue Berghoff was diagnosed with LBD, a documentary “Sue’s Story: A Journey with Lewy Body Dementia” was made. BSN’s Robin Riddle is featured in “Sue’s Story.” (Watch the film’s trailer.) The Foundation refers families to BSN for support and brain donation. BSN refers families in the Morgan Hill area to the Foundation’s dementia caregiver support group.
UC Davis Alzheimer’s Disease Center
The mission of the UC Davis Alzheimer’s Disease Center is to advance the understanding of Alzheimer’s disease and related dementias through comprehensive patient evaluations and cutting edge research. The Center brings together an interdisciplinary group of dedicated researchers and clinical staff (neurologists, geriatric psychiatrists, geriatricians, neuropsychologists, psychometrists, social workers, and nurses) to carry out its mission. Brain Support Network refers Sacramento-area PSP, CBD, and LBD families to the Center. The Center’s brain donation program refers non-UCD families to Brain Support Network for brain donation information. ucdmc.ucdavis.edu/alzheimers
UC San Francisco Memory and Aging Center (MAC)
The mission of the UCSF Memory and Aging Center (MAC) is to provide the highest quality of care for individuals with cognitive problems, to conduct research on causes and cures for degenerative brain diseases, and to educate health professionals, patients and their families. The UCSF MAC and BSN have co-hosted a number of events over the years. Most recently (July 2024, we hosted Dr. Adam Boxer for an update on PSP and CBS research. Since the MAC is at the forefront of PSP, CBD, and tau imaging research worldwide, Brain Support Network refers PSP and CBD families to the MAC to participate in research and for clinical care. MAC neurologists, social workers, and nurses refer PSP, CBD, and LBD families to Brain Support Network for support. And the UCSF Neurodegenerative Disease Brain Bank refers non-MAC families to Brain Support Network for brain donation information. memory.ucsf.edu
International Partners
BSN’s international partners assist in our mission of education by extending our network of information exchange beyond national borders. The specific relationship that we have with each partner is described below.
ALLFTD
The ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) Research Study is an NIH-funded effort. Research sites are spread across the US and Canada. Since not all research sites have their own brain banks, BSN’s services can be utilized by any site for assistance with brain donation arrangements. As a neuropathology partner in the ALLFTD study, BSN is pleased to have contributed to published FTLD research that has resulted from this study. www.allftd.org
Lewy Body Dementia Canada
Lewy Body Dementia Canada is an actively curated source of LBD info. Brain Support Network refers those coping with LBD, especially caregivers, to Lewy Body Dementia Canada for insights and tips on maintaining the health of all caregivers and their loved ones with dementia. Lewy Body Dementia Canada refers LBD families to Brain Support Network for brain donation help. www.lewy.ca