Online Groups Meeting Anytime and Virtual Groups Meeting Monthly
Online support groups can be very convenient, especially during the COVID-19 pandemic or if you live in an area that doesn’t have a face-to-face group. There are two types of online groups — those that are open any time and those that conduct virtual meetings monthly at specific times.
Online Support Groups – Meeting Anytime
There are several disorder-specific online-only support groups. Unless indicated, you must be a member to read and post. These are the most active:
MSA
Multiple System Atrophy Buddies Facebook Group
https://www.facebook.com/
To join, click on “Join Group” button
Membership: While most active members are MSA caregivers, there are a few active members who have an MSA diagnosis.
PSP
Progressive Supranuclear Palsy Facebook Group
https://www.facebook.com/
To join, click on “Join Group” button
Membership: While most active members are PSP caregivers, there are a few active members who have a PSP diagnosis.
PSP Association Forum
http://psp.healthunlocked.com
Membership: While most active members are PSP or CBD caregivers based in the UK, there are one or two active members who have a PSP or CBD diagnosis and a few American members. Anyone may read. Must be a member to post.
PSP/CBD Community in Smart Patients
http://smartpatients.com
Membership: Community began in January 2018. Most members are PSP or CBD caregivers based in the US. Must be a member to read and post.
Virtual Support Groups – Meeting Monthly
CurePSP sponsors PSP, CBD, and MSA sup
The groups include:
Mixed PSP/MSA/CBD
People with PSP/MSA/CBD and their Carepartners
Meeting Time: 3rd Thursday, Noon-1:30pm PT
Registration Link: https://us02web.zoom.us/meeting/register/tZEtcO6sqzspHtXUtmqAN93amV39diWvEbw4
Meeting Tel: +1 646 558 8656, Meeting ID: 850 7745 0341
Facilitators: Jessica Shurer, LCSW, [email protected] and Diane Breslow, LCSW, [email protected]
People with PSP/MSA/CBD Who Are Living Alone (flying solo)
Meeting Time: 3rd Wednesday, 11am-Noon PT
Registration: https://us02web.zoom.us/meeting/register/tZUtf-qoqj0tE9wLCP-ddhcG3P1duHQPPv8a
Meeting Tel: +1 646 558 8656, Meeting ID: 850 7745 0341
Facilitators: Diane Breslow, LCSW, [email protected] and Adriana Gonzalez, LCSW, [email protected]
Carepartners of People with PSP/MSA/CBD
Meeting Time: 2nd/4th Thursday at 12:00-1:30pm PST
Registration Link: https://us02web.zoom.us/meeting/register/tZAvceitrzotGdfteL8WR2LX01SjASUJ1Efr
Meeting Tel: +1 646 558 8656, Meeting ID: 842 6151 1733
Facilitator: Diane Breslow, LCSW, [email protected] and Ileen McFarland, [email protected]
Adult Children of People with PSP/MSA/CBD
Meeting Time: 2nd Wednesday, 5-6:30pm PT
Registration: https://us02web.zoom.us/meeting/register/tZUld-mhqzIiHNFXylFSnuvb-4o_0uW7Ydv_
Meeting Tel: +1 646 558 8656, Meeting ID: 818 0095 9865
Facilitator: Laurie Spindler, [email protected]
(Women Only) Carepartners of People with PSP/MSA/CBD Support Group
Meeting Time: First Thursday of each month from 11:30am-12:30pm PST
Registration Link: https://us02web.zoom.us/meeting/register/tZIod–prDIiG93cgs_-lKhJJ-E2Et5mW3U0
Meeting Tel: +1 646 558 8656, Meeting ID: 865 0612 9819
Facilitator: Nancy Montgomery, [email protected] and Janis Appel, [email protected]
(Men Only) Carepartners of People with PSP/MSA/CBD Support Group
Meeting Time: First Tuesday of each month from 5:00pm-6:00pm PST
Registration Link:
https://us02web.zoom.us/meeting/register/tZIodu2qrjsqH9UvjxLyw__eP3Ep21zHKmvj
Meeting Tel: +1 646 558 8656, Meeting ID: 865 1420 0051
Facilitators: Tom Tait, [email protected] and Bill Furlow, [email protected]
After the Loss: A Bereavement Support Group for Carepartners
Meeting Time: 3rd Monday of each month at 11:00am PST
Registration Link: https://us02web.zoom.us/meeting/register/tZwtdu-urz8rHdSU-qMSeeVgfEAMunr3e7bp
Meeting Tel: +1 646 558 8656, Meeting ID: 880 1661 4170
Facilitators: Diane Breslow, LCSW, [email protected] and Meghan Sweeney, LCSW, [email protected]
CBD
People with CBD
Meeting Time: 1st Tuesday of every month at 3:00pm PST
Registration: https://us02web.zoom.us/meeting/register/tZwrcu2vrTIsE9angifxZkh2PCyWI182Ouin
Meeting Link: https://register.gotowebinar.com/register/6112622030926313730
Meeting Tel: 213-929-4232, Access Code: 611-128-331
Facilitator: Karry Forsythe, [email protected]
People with CBD and their Carepartners
Meeting Time: 3rd Tuesday of each month at 1:00pm PST
Registration: https://attendee.gotowebinar.com/register/6157272128304268816
Meeting Link: https://register.gotowebinar.com/register/45016539
Meeting Tel: 314-878-0222, Access Code: 314-391-254
Facilitator: Janet Edmunson, 508-308-4195, [email protected]
MSA
People with MSA
Meeting Time: 3rd Monday of each month at 5:00pm PST
Registration: https://us02web.zoom.us/meeting/register/tZUtf-CgrD0uG9CGa7yq3806EcOd8xhmUaqR
Meeting Link: https://register.gotowebinar.com/register/8182973838726361090
Meeting Tel: 914-614-3221, Access Code: 500-058-061
Facilitator: Cathy Chapman, [email protected], 307-332-4144
Carepartners of People with MSA
Meeting Time: 1st Monday of each month from 5:00pm – 6:00pm PST
Registration: https://us02web.zoom.us/meeting/register/tZIqf-uhrDgoHdfeY_XXwpyWe602VedTnWbK
Meeting Link: https://register.gotowebinar.com/register/8844354271892149249
Meeting Tel: 415-655-0060, Access Code: 950-759-636
Facilitator: Tom Tait, [email protected], 856-725-2450
PSP
People with PSP
Meeting Time: 2nd & 4th Monday of each month from 4:30pm – 5:30pm PST (no meetings in August)
Registration Link: https://us02web.zoom.us/meeting/register/tZUpce-rrD4qHdVzkfx0e8OSq94-UEu7dcaC
Meeting Tel: +1 646 558 8656, Meeting ID: 814 6632 5071
Facilitator: Margo Silk, [email protected], 609-265-7070
Carepartners of People with PSP
Meeting Time: 3rd Tuesday of each month at 5:00pm PST
Registration: https://attendee.gotowebinar.com/register/7620701206235337739
Meeting Link: https://register.gotowebinar.com/register/103248952
Meeting Tel: 914-339-0024, Access Code: 753-354-191
Facilitator: Janet Edmunson, [email protected], 508-308-4195
Carepartners of People with Advanced PSP
Meeting Time: 4th Wednesday of each month from 4:00pm – 5:00pm PST
Registration: https://attendee.gotowebinar.com/register/8583419301916409613
Meeting Link: https://register.gotowebinar.com/register/103130017
Meeting Tel: 951-266-6124, Access Code: 289-328-424
Facilitator: Steve Garcia, [email protected], 201-677-2542
National Support Resources
Some of the national organizations offer tollfree support phone numbers, such as:
- The Association for Frontotemporal Degeneration
HelpLine 866-507-7222 - Lewy Body Dementia Association
Caregiver Link 800-539-9767 - Lewy Body Dementia Resource Center
Live Helpline 833-LBD-LINE (answered 8am to 8pm ET, daily) - MSA Coalition
Support Hotline 866-737-5999