Brain Support Network (BSN) is a non-profit, charitable organization dedicated to the well-being of those challenged by neurodegenerative disorders. Brain Support Network has three missions:
First, Brain Donation
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 Degeneration (FTD), or vascular dementia. Brain Support Network has helped over 800 families accomplish brain donation in the US. Of these families, half received a confirmed diagnosis that was different than the clinical diagnosis. Rather than contribute funds toward research, we contribute what the researchers need but are not organized to collect themselves: brain tissue of patients diagnosed with these rare neurological disorders. Learn more.
BSN has completed brain recoveries in all but a handful of states and we’re confident that we navigate this final handful, despite the moderate regulatory variation across states. Because regulatory variation across countries is more significant, BSN is not prepared to undertake brain recoveries outside the USA. Learn more about options for brain donation in Canada.
Second, Family Education
Brain Support Network tracks research, videos, and published material into the four Atypical Parkinsonism disorders (LBD, PSP, MSA, CBD), sifting through medical journals and other sources. We help busy families identify the best resources so that they can have meaningful discussions with medical providers and serve as effective advocates. We also keep an email list of caregivers and patients, organized by disorder, sending emails about research programs, relevant findings, upcoming events, and articles on caregiving. We never share our email list, even with affiliated groups. Learn more.
Third, Caregiver Support Group
(scope: Northern California, USA)
We convene semi-quarterly caregiver support group meetings in Northern California. These meetings are for family caregivers only and focus on the four Atypical Parkinsonisms (LBD, PSP, MSA, CBD). Meetings allow caregivers to receive support from others who have lived this experience and can provide information, practical insights, and empathy. Uniquely in the support group community, 20% of BSN meeting 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. Learn more.
Download our 2-page tri-fold brochure
Suitable for color or black-and-white printing, that describes BSN and explains our three missions.