Online Groups or Monthly Webinars

Online-only Support Groups

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:

CBGD Support Yahoo!Group

groups.yahoo.com/neo/groups/cbgd_support/info
To join, click on purple “+ Join Group” button
Membership: While most active members are CBD/CBS caregivers, there are a few active members who have a CBD/CBS diagnosis. “CBGD” is an old term for CBD.

LBD Caregivers Yahoo!Group

groups.yahoo.com/neo/groups/LBDcaregivers/info
To join, click on purple “+ Join Group” button
Membership: Nearly all active members are LBD caregivers.

LBD Caring Spouses Yahoo!Group

groups.yahoo.com/neo/groups/LBD_caringspouses/info
To join, click on purple “+ Join Group” button
Membership: Limited to LBD spouse caregivers.

Multiple System Atrophy Buddies Facebook Group

https://www.facebook.com/groups/MSABuddies/
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.

Progressive Supranuclear Palsy Facebook Group

https://www.facebook.com/groups/ProgressiveSupranuclearPalsy/
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 Forum

http://forum.psp.org/
Membership: While most active members are PSP or CBD caregivers, there are one or two active members who have a PSP or CBD diagnosis. Anyone may read and search. Must be a member to post.

Shy Drager Yahoo!Group

groups.yahoo.com/neo/groups/shydrager/info
To join, click on purple “+ Join Group” button
Membership: Perhaps half of the active members are MSA caregivers and half are those with an MSA diagnosis. “Shy Drager” is an old term for MSA.

Monthly Webinars

CurePSP sponsors PSP, CBD, and MSA support groups where participants can participate by webinar, using your phone or computer for audio.  Some of the webinars allow participants to participate by phone only – never needing to log-in via computer – and some require participants to log-in first.

If a speaker phone is being used, it must be muted most of the time. If participating by computer, participants can obtain audio through computer speakers or the telephone, and can make comments either through a microphone/headset, by telephone, or by typing comments online.

Groups are generally for caregivers-only or for those with a diagnosis. Sometimes the caregiver-only meetings are split into carepartners (usually defined as spouses but sometimes defined as those living with the person with a diagnosis) and adult children. Since many with a PSP, CBD, or MSA diagnosis cannot speak or type quickly, caregivers often participate in the group meetings for those with a diagnosis. Participants are usually in the US but some are from other countries. Meetings are usually one-hour in duration but can go longer.

Even if you intend to participate, pre-registration is ideal. Once you pre-register, you will receive a meeting reminder in advance of each meeting. And you will receive any notices of cancellations or schedule changes. For more information, contact the facilitator. The groups include:

People with PSP
Meeting Time(s): 2nd & 4th Monday of each month at 7:30pm Eastern
Meeting Link: https://www1.gotomeeting.com/register/837967312
Meeting Tel: 702-489-0008; Access Code: 674-392-185
Facilitator: Kelley Pistacchio, 401-724-3673, [email protected]

People with PSP and their Carepartners
Meeting Time: 2nd Tuesday of each month at 11:00am Eastern
Meeting Link: https://global.gotowebinar.com/join/100000000063927229/310618922
Meeting Tel: 415-655-0055; Access Code: 858-245-213
Facilitator: Norm Horofker, 902-229-9239, [email protected]

Carepartners of People with PSP
Meeting Time: 3rd Monday of each month at 6:00pm Eastern
Meeting Link: https://www1.gotomeeting.com/register/629065833
Meeting Tel: +1 646-307-1721; Access Code: 888-602-095
Facilitator: Mike Flanagan (Canada), 519-995-4073, [email protected]

Meeting Time: 4th Tuesday of each month at 8:00pm Eastern
Meeting Link: https://www1.gotomeeting.com/register/714412985
Meeting Tel: 914-339-0024; Access Code: 753-354-191
Facilitator: Janet Edmunson, 207-799-4963, [email protected]

Carepartners Dealing with Advanced PSP
Meeting Time: 4th Wednesday of each month at 7:00pm Eastern
Meeting Link: https://www1.gotomeeting.com/register/609461433
Meeting Tel: 951-266-6124; Access Code: 289-328-424
Facilitator: Steve Garcias, 201-677-2542, [email protected]

Adult Children of People with PSP
Meeting Time: 2nd Wednesday of each month at 8:00pm Eastern
Meeting Link: https://www2.gotowebinar.com/register/394843042
Meeting Tel: 415-655-0061; Access Code: 204-257-741
Facilitator: Laurie Huffman, [email protected]

People with CBD and their Carepartners
Meeting Time: 1st Sunday of each month at 7:00pm Eastern
Meeting Link: https://attendee.gotowebinar.com/register/7518350934289931522
Meeting Tel: 914-614-3221; Access Code: 805-645-922
Facilitator: Karry Forsythe, 903-683-0010, [email protected]

Meeting Time: 3rd Tuesday of each month at 4:00pm Eastern
Meeting Link: https://www1.gotomeeting.com/register/893287256
Meeting Tel: 312-878-0222; Access Code: 602-587-662
Facilitator: Janet Edmunson, 207-799-4963, [email protected]

People with MSA
Meeting Time: 3rd Monday of each month at 8:00pm Eastern
Meeting Link: https://www2.gotomeeting.com/register/759482131
Meeting Tel: 312-878-0211; Access Code: 349-078-984
Facilitator: Gary Rose, 360-200-5230, [email protected]

Carepartners of People with MSA
Meeting Time: 1st Monday of each month at 8:00pm Eastern
Meeting Link: https://www2.gotomeeting.com/register/977578139
Meeting Tel: 773-945-1011; Access Code: 605-218-650
Facilitator: Carol Langer, 781-608-4680, [email protected]

Carepartners Who Are Grieving
Meeting Time: 2nd Wednesday of each month at 8:00pm Eastern
Meeting Link: https://www1.gotomeeting.com/register/389312320
Meeting Tel: 470-200-0302; Access Code: 213-853-650
Facilitator: Richard Cheu, 732-245-3173, [email protected]

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
  • MSA Coalition
    Support Hotline 866-737-5999