Today, Brain Support Network (BSN) coordinates five monthly support groups for those in Northern or Central California who are coping with LBD (Lewy body dementia), PSP (progressive supranuclear palsy), CBD (corticobasal degeneration), and MSA (multiple system atrophy). We coordinate support groups for caregivers only and for those with a diagnosis. Download and share our group flyer.
Do you live in other parts of the US? There are support groups in other geographies, online groups, or monthly virtual support groups.
BSN Caregiver-Only Support Group Meetings
We hold three simultaneous caregiver-only support group meetings on the second Sunday, 5-6:30pm —
- LBD caregivers
- PSP/CBD caregivers
- MSA caregivers
We alternate between virtual meetings (odd-numbered months) and in-person meetings (even-numbered months). For the in-person meetings, we meet at a casual restaurant in San Mateo, where most attendees have dinner (separate checks). Attendance is 4-20 at each separate meeting.
When the second Sunday is a holiday (such as Mother’s Day in May), we meet on the third Sunday. Depending on the timing of Easter and whether a Bay Area-based sports team makes it to a championship game, other exceptions may occur.
Generally a week before each meeting, we email an invitation, requesting responses by noon the Saturday before a meeting. Advance notice allows us to ensure that adequate volunteers with disorder-specific expertise can attend to facilitate discussions. If we have a high number of attendees, we try to break into smaller groups to allow for everyone to have several opportunities to speak. And, advance notice for the in-person meetings allows us to adjust our restaurant reservations.
Whether virtual or in-person, the conversation is guided by volunteers who have already lost loved ones with that disorder. In most cases, the loved ones’ diagnoses were confirmed through brain donation that was arranged by Brain Support Network.
A caregiver is anyone who has concern for another — not necessarily those providing hands-on care. By gathering with others in a similar journey, we realize we are not alone and can speak openly with those who understand. Limiting these meetings to caregivers allows for candid conversations that would not be possible in the presence of those diagnosed and for a focus on the needs of the caregiver, if only briefly.
Complete our online form if you’d like to join us. Those who attend the Brain Support Network meetings report their relief at finally being able to talk openly with others about their feelings and challenges. Our caregiver groups have been meeting since 2004!
BSN Support Group Meetings for Those With a Diagnosis
We offer monthly virtual support groups meetings for those with a diagnosis of:
- MSA: meetings alternate between the second Sunday, 3-4pm (even-numbered months) and the first Wednesday, noon-1pm (odd-numbered months)
- PSP/CBD: second Sunday, 12:30-1pm. (The May meeting is on the third Sunday.)
We welcome those who live in Northern or Central California.
These meetings are loosely-facilitated by others with a diagnosis. Caregivers may join along with their family member with a diagnosis as long as the caregiver has as light a footprint as possible. We have about 50 people with an MSA, PSP, or CBD diagnosis on our meeting lists, with attendance of 3-10 at our meetings. Complete our online form if you’d like to join us.
All Northern/Central California Support Options
Are you looking for even more support and you live in Northern or Central California? See our links to all Northern and Central California support groups for LBD, MSA, and PSP/CBD.