Several organizations offer virtual support group meetings where participants can join with video or audio-only.
For Lewy body dementia: the Lewy Body Dementia Association (LBDA) and the Lewy Body Dementia Resource Center (LBDRC) sponsor virtual support group meetings.
For progressive supranuclear palsy, corticobasal syndrome, and multiple system atrophy: CurePSP and PSP Awareness (by CCF – Coleen Cunningham Foundation) sponsor virtual support group meetings.
Below, we list groups for those with a diagnosis first and then caregiver-only groups. Occasionally groups are mixed. This list was last updated in July 2024.
For support anytime, check out our list of online communities.
LBD
Early Onset People with LBD
Note: Younger than 60 and/or newly diagnosed, or not yet diagnosed and struggling for answers
Hosted by: LBDRC
Day/Time: 2nd and 4th Wednesday, 12-1pm PT
Registration: Email Norma Loeb, LBDRC, [email protected]
Facilitator: Someone with early onset LBD
People with LBD (“Living with Lewy”)
Hosted by: LBDA
Day/Time: Wednesdays, 9-11am PT
Registration: Email LBDA, [email protected]. The meeting link is also posted on the LBDA’s private “Living with Lewy” Facebook page
Facilitator: Staff from the Lewy Body Dementia Association
People with LBD (“LBD Crew”)
Hosted by: LBDRC
Day/Time: 1st & 3rd Thursday, 8-9am PT
Registration: Email Norma Loeb, LBDRC, [email protected]
Facilitator: Norma Loeb, former LBD caregiver
LBD Caregivers
Hosted by: LBDRC
Day/Time: 2nd & 4th Monday, 4-5pm PT
Registration: Email Norma Loeb, LBDRC, [email protected]
Facilitator: Former LBD caregivers
LBD Caregivers “At This Moment”
Note: Group focuses solely on the caregiver’s feelings and needs at any given moment
Hosted by: LBDRC
Day/Time: 1st & 3rd Wednesday, 9-10am PT
Registration: Email Norma Loeb, LBDRC, [email protected]
Facilitator: Former LBD caregivers
LBD Caregivers
In the summer 2024, the Lewy Body Dementia Resource Center (LBDRC) is organizing a support group meeting for a time appropriate for west coast participants.
Mixed PSP/MSA/CBD
People with PSP/MSA/CBD Who Are Living Alone (“Flying Solo”)
Hosted by: CurePSP
Day/Time: 3rd Wednesday, 11am-12pm PT
Registration: us02web.zoom.us/meeting/register/tZUtf-qoqj0tE9wLCP-ddhcG3P1duHQPPv8a
Details: Phone 646 558 8656, Meeting ID 850 7745 0341
Facilitators: Diane Breslow, LCSW, [email protected] and Adriana Gonzalez, LCSW, [email protected]
People with PSP/MSA/CBD and their Care Partners
Hosted by: CurePSP
Day/Time: 3rd Thursday, 12-1:30pm PT
Registration: us02web.zoom.us/meeting/register/tZEtcO6sqzspHtXUtmqAN93amV39diWvEbw4#
Details: Phone 646 558 8656, Meeting ID 850 7745 0341
Facilitators: Jessica Shurer, LCSW, CurePSP, [email protected] and Diane Breslow, LCSW, [email protected]
Anyone Touched by Atypical Parkinsonism (“On the Journey”)
Hosted by:PSP Awareness
Day/Time: Every Thursday, 4-6pm PT. Last meeting monthly is a speaker with open discussion
Registration: https://us06web.zoom.us/meeting/register/tZIpc-6rrjMvG9ZrSSfmO4Y2_tWc3a3hPwqa#/registration
Facilitator: Kate Borgert
Adult Children of People with PSP/MSA/CBD
Hosted by: CurePSP
Day/Time: 2nd Wednesday, 5-6:30pm PT
Registration: us02web.zoom.us/meeting/register/tZUld-mhqzIiHNFXylFSnuvb-4o_0uW7Ydv_
Details: Phone 646 558 8656, Meeting ID 818 0095 9865
Facilitator: Laurie Spindler, [email protected]
Care Partners of People with PSP/MSA/CBD
Hosted by: CurePSP
Day/Time: 2nd Thursday, 12-1:30pm PT
Registration: us02web.zoom.us/meeting/register/tZAvceitrzotGdfteL8WR2LX01SjASUJ1Efr
Details: Phone 646 558 8656, Meeting ID 842 6151 1733
Facilitator: Diane Breslow, LCSW, [email protected] and Ileen McFarland, [email protected]
(Men Only) Care Partners of People with PSP/MSA/CBD
Hosted by: CurePSP
Day/Time: 1st Tuesday & 1st Thursday, 5-6pm PT
Registration:
us02web.zoom.us/meeting/register/tZIodu2qrjsqH9UvjxLyw__eP3Ep21zHKmvj
Details: Phone 646 558 8656, Meeting ID 865 1420 0051
Facilitators: Tom Tait, [email protected] and Bill Furlow, [email protected]
(Women Only) Care Partners of People with PSP/MSA/CBD
Hosted by: CurePSP
Day/Time: 1st Thursday, 11:30am-12:30pm PT and Third Wednesday, 3:30pm-5pm PT
Registration: us02web.zoom.us/meeting/register/tZIod–prDIiG93cgs_-lKhJJ-E2Et5mW3U0
Details: Phone 646 558 8656, Meeting ID 865 0612 9819
Facilitators: Nancy Montgomery, [email protected] and Janis Appel, [email protected]
Care Partners of People with Advanced PSP/CBD/MSA
Hosted by: CurePSP
Day/Time: 4th Wednesday, 4-5pm PT
Registration: https://us02web.zoom.us/meeting/register/tZIld–rqDsrHNVXbnPaifT8em6CI0IOSjSZ#/registration
Details: Phone 951-266-6124, Meeting ID 289-328-424
Facilitator: Steve Garcia, [email protected], 201-677-2542
Bereavement for Adult Children Care Partners
Hosted by: CurePSP
Day/Time: 1st Tuesday, 4pm PT
Registration: https://us02web.zoom.us/meeting/register/tZUvf-CqqjMiGNREZtAsoxTxNQa-OI6ktfDb#/
Details: Phone 646 558 8656 Meeting ID: 812 8924 8820
Facilitators: Kathy DeMarco, [email protected] and Kathleen Egan, [email protected]
Bereavement for Care Partners (“After the Loss”)
Hosted by: CurePSP
Day/Time: 3rd Tuesday, 11am PT
Registration: us02web.zoom.us/meeting/register/tZwtdu-urz8rHdSU-qMSeeVgfEAMunr3e7bp
Details: Phone 646 558 8656, Meeting ID 880 1661 4170
Facilitators: Diane Breslow, LCSW, [email protected] and Meghan Sweeney, LCSW, [email protected]
CBD
People with CBD and Care Partners
Hosted by: CurePSP
Day/Time: 1st Tuesday, 3pm PT
Registration: us02web.zoom.us/meeting/register/tZwrcu2vrTIsE9angifxZkh2PCyWI182Ouin
Details: Phone 213-929-4232, Meeting ID 611-128-331
Facilitator: Karry Forsythe, [email protected]
People with CBD and Care Partners
Hosted by: CurePSP
Day/Time: 3rd Tuesday, 1pm PT
Registration: us02web.zoom.us/meeting/register/tZwrcu2vrTIsE9angifxZkh2PCyWI182Ouin#
Details: Phone 314-878-0222, Meeting ID 314-391-254
Facilitator: Janet Edmunson, 508-308-4195, [email protected]
MSA
People with MSA
Hosted by: CurePSP
Day/Time: 3rd Monday, 5pm PT
Registration: us02web.zoom.us/meeting/register/tZUtf-CgrD0uG9CGa7yq3806EcOd8xhmUaqR
Details: Phone 914-614-3221, Meeting ID 500-058-061
Facilitator: Cathy Chapman, [email protected], 307-332-4144
Care Partners of People with MSA
Hosted by: CurePSP
Day/Time: 1st Monday, 5-6pm PT
Registration: us02web.zoom.us/meeting/register/tZIqf-uhrDgoHdfeY_XXwpyWe602VedTnWbK
Details: Phone 415-655-0060, Meeting ID 950-759-636
Facilitator: Tom Tait, [email protected], 856-725-2450
PSP
People with PSP
Hosted by: CurePSP
Day/Time: 2nd & 4th Monday, 4:30pm-5:30pm PT (no meetings in August)
Registration: us02web.zoom.us/meeting/register/tZUpce-rrD4qHdVzkfx0e8OSq94-UEu7dcaC#
Details: Phone 646 558 8656, Meeting ID: 814 6632 5071
Facilitator: Margo Silk, [email protected], 609-265-7070
Care Partners of People with PSP
Hosted by: CurePSP
Day/Time: 3rd Tuesday, 5pm PT
Registration: us02web.zoom.us/meeting/register/tZUlfumgqDkuEtfZ-Ik6fdSJaw3-sYQ88rQI#
Details: Phone 914-339-0024, Meeting ID 753-354-191
Facilitator: Janet Edmunson, [email protected], 508-308-4195