Brain Support Network operates closely with organizations in related fields, including brain banks, research institutes, and non-profits working to find solutions and care for persons diagnosed with neurological disorders. Many of our partners refer families to us for participation in our support group and for organization of brain donation.
BSN National partners have a scope of operations that extends across the United States, and sometimes more broadly still. The specific relationship that we have with each partner 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 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 Parkinson’s Disease families to Brain Support Network for brain donation information. www.apdaparkinson.org
CurePSP is a non-profit that is dedicated to awareness, education, care, and cure for devastating Prime of Life neurodegenerative diseases. CurePSP has funded more than 160 research studies primarily in PSP and CBD. Brain Support Network partnered with CurePSP most recently in February 2016 for the CurePSP Regional Conference in San Mateo. Many of CurePSP’s educational materials are listed on BSN’s “Top Resources” sheets for PSP and CBD. CurePSP refers Northern California PSP and CBD families to Brain Support Network for support. www.psp.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. 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 recently expanded to include studies and a registration option for atypical parkinsonisms. Brain Support Network is an MJFF community partner for clinical trial recruitment. MJFF educational resources are available on BSN’s website. www.michaeljfox.org
The Multiple System Atrophy Coalition® is a positive beacon of hope standing up to a little known, rare, insidious disorder. The MSA Coalition has a primary purpose of assisting researchers to find a cure. In the meantime, The Coalition also provides patient and caregiver support. Brain Support Network partners with The MSA Coalition at its national conferences to raise awareness for MSA brain donation. Many of The Coalition’s educational materials are listed on BSN’s “Top Resources” sheet for MSA. And, MSA Coalition refers Northern California MSA families to Brain Support Network for support. www.multiplesystematrophy.org
National Parkinson Foundation (NPF)
Parkinson’s Disease Foundation (PDF)
The Parkinson’s Disease Foundation (PDF) is a leading national presence in Parkinson’s disease research, education and public advocacy. Brain Support Network refers those with atypical parkinsonism disorders to PDF to learn about symptoms through its educational webinars. PDF refers Parkinson’s Disease families to Brain Support Network for brain donation information. www.pdf.org
BSN 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. The scope of BSN’s operations is described here.
Lewy Body Dementia Canada
Lewy Body Dementia Canada is an actively curated source of Lewy Body Dementia (LBD) information. 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 information. www.lewy.ca
The World Parkinson Coalition
The next World Parkinson Congress will be held in Kyoto, Japan from June 4-7, 2019.
The World Parkinson Coalition is a nonprofit organization dedicated to providing an international forum to learn about the latest scientific discoveries, medical practices, caregiver initiatives and advocacy work related to Parkinson’s disease. The WPC hosts the World Parkinson Congress every three years. The fourth Congress was held in Portland, Oregon in September 2016. As an official partner organization, Brain Support Network Board members spoke about BSN’s brain donation mission and the educational resources we have on atypical parkinsonism disorders. www.worldpdcoalition.org
Northern California Organizations
BSN regional partners have a scope of operations that covers Northern California, generally centered on the San Francisco Bay Area. 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 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. Brain Support Network refers San Francisco Bay Area LBD, PSP, MSA, and CBD families to Family Caregiver Alliance for 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. And Family Caregiver Alliance refers families dealing with neurodegenerative disorders to BSN for brain donation information. 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 October 2012 for an atypical parkinsonism symposium in Burlingame. Brain Support Network refers local PSP, CBD, LBD, and MSA families to SMDC for clinical evaluation and research. Several of the SMDC movement disorder specialists refer atypical parkinsonism families to Brain Support Network for support and resources. med.stanford.edu/neurology/divisions/md.html
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. 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’s neurologists, social workers, and nurses refer PSP, CBD, and LBD families to Brain Support Network for support. And the MAC’s Neurodegenerative Disease Brain Bank refers non-MAC families to Brain Support Network for brain donation information. memory.ucsf.edu