https://us02web.zoom.us/meeting/register/tZAqf-CorTIiHdUFmS9Of21qfhFY5-CVJPZx
Meeting Time(s): 2nd & 4th Monday of each month from 7:30pm – 8:30pm Eastern (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, marsilk115@aol.com, 609-265-7070
Meeting Time(s): Third Wednesday of each month from 2:00-3:30pm EST April 2023 meeting will meet on the Fourth Wednesday, April 26th
Registration Link: https://us02web.zoom.us/meeting/register/tZUtf-qoqj0tE9wLCP-ddhcG3P1duHQPPv8a
Meeting Tel: 1 669 900 9128 Meeting ID: 810 8304 6798
Facilitator: Diane Breslow, LCSW, dbreslow11@icloud.com and Adriana Gonzalez, LCSW, acg008@health.ucsd.edu
Meeting Time(s): First Thursday of each month from 2:30pm-3:30pm EST and third Wednesday of each month from 6:30-8:00pm EST
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 njmont76@gmail.com and Janis Appel jappel1130@gmail.com
This group is for any diagnosed individuals, carepartners, families, friends, etc.
Meeting Time(s): 3rd Thursday of every month from 3:00pm-4:30pm EST
Registration Link: https://us02web.zoom.us/meeting/register/tZEtcO6sqzspHtXUtmqAN93amV39diWvEbw4
Meeting Tel: +1 646 558 8656 Meeting ID: 850 7745 0341
Facilitators: Jessica Shurer MSW, LCSW shurer@curepsp.org , Diane Breslow, LCSW dbreslow11@icloud.com
Meeting Time(s): 3rd Monday of each month at 8:00pm Eastern
Registration Link: https://us02web.zoom.us/meeting/register/tZUtf-CgrD0uG9CGa7yq3806EcOd8xhmUaqR
Meeting Tel: +1 646 558 8656 Meeting ID: 810 8982 6414
Facilitator: Cathy Chapman, 307-332-4144, cec@wyoming.com
Meeting Time(s): 3rd Tuesday of each month at 2:00pm Eastern
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 dbreslow11@icloud.com and Meghan Fera, LCSW meghansweeney1@gmail.com
Meeting Time(s): 3rd Tuesday of each month at 4:00pm Eastern
Registration Link: https://us02web.zoom.us/meeting/register/tZ0rceGsrTgjE9GT-VhSaf90fppuYOn7cDSA#/registration
Meeting Tel: 631-992-3221 Meeting ID: 447-016-877
Facilitator: Janet Edmunson, 508-308-4195, janet@janetedmunson.com
Meeting Time(s): 3rd Tuesday of each month at 8:00pm Eastern
Registration Link: https://attendee.gotowebinar.com/register/7620701206235337739
Meeting Tel: 562-247-8321 Meeting ID: 739-162-551
Facilitator: Janet Edmunson, 508-308-4195, janet@janetedmunson.com
Meeting Time(s): 4th Wednesday of each month from 7:00pm – 8:00pm Eastern
Registration Link: https://us02web.zoom.us/meeting/register/tZIld–rqDsrHNVXbnPaifT8em6CI0IOSjSZ
Meeting Tel: 914-614-3221 Meeting ID: 732-403-054
Facilitator: Steve Garcia, 201-677-2542, advancedstagespsp@gmail.com
Meeting Time(s): 2nd & 4th Monday of each month from 7:30pm – 8:30pm Eastern (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 marsilk115@aol.com 609-265-7070
Meeting Time(s): 1st Saturday of every month from 2:00pm-3:00pm EST
Registration Link: https://us02web.zoom.us/meeting/register/tZEqceuorTwjH9F2SJcCo7NT9spGM84T_6jn
Meeting Tel: +1 646 558 8656 Meeting ID: 857 6203 7955
Facilitator: Emma Wodwaski ewodwaski@gmail.com and Sanjay Geevarghese sanjaygeevarghese@gmail.com
Note: This meetup group is a space for people to connect, share, learn, brainstorm and be active in the cause. Both Sanjay and Emma have personal experience as grandchildren of people living with these diseases. You are welcome to reach out to them if you would prefer to connect individually or before attending the group, if you have questions or want to see if it is right for you.
Meeting Time(s): 1st Monday of each month from 8:00pm – 9:00pm Eastern
Registration Link: https://us02web.zoom.us/meeting/register/tZIqf-uhrDgoHdfeY_XXwpyWe602VedTnWbK
Meeting Tel: +1 646 558 8656 Meeting ID: 867 8292 3273
Facilitator: Tom Tait, tom.tait@comcast.net, 856-725-2450
Meeting Time(s): 1st Tuesday of every month at 6:00pm EST
Regisration Link: https://us02web.zoom.us/meeting/register/tZwrcu2vrTIsE9angifxZkh2PCyWI182Ouin
Meeting Tel: 213-929-4232 Meeting ID: 611-128-331
Facilitator: Karry Forsythe, forsythe76@gmail.com
Meeting Time(s): First Tuesday of each month at 8:00pm EST and first Thursday of each month at 5:00pm EST
Registration Link: https://us02web.zoom.us/meeting/register/tZIodu2qrjsqH9UvjxLyw__eP3Ep21zHKmvj
Meeting Tel: +1 646 558 8656 Meeting ID: 865 1420 0051
Facilitators: Tom Tait tom.tait@comcast.net and Bill Furlow billfurlownc@gmail.com
Meeting Time(s): First Thursday of each month from 2:30pm-3:30pm EST and third Wednesday of each month from 6:30-8:00pm EST
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 njmont76@gmail.com and Janis Appel jappel1130@gmail.com
Meeting Time(s): First Tuesday of each month at 8:00pm EST and first Thursday of each month at 5:00pm EST
Registration Link: https://us02web.zoom.us/meeting/register/tZIodu2qrjsqH9UvjxLyw__eP3Ep21zHKmvj
Meeting Tel: +1 646 558 8656 Meeting ID: 865 1420 0051
Facilitators: Tom Tait tom.tait@comcast.net and Bill Furlow billfurlownc@gmail.com
Meeting Time(s): 2nd & 4th Monday of each month from 7:30pm – 8:30pm Eastern (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, marsilk115@aol.com, 609-265-7070
The CurePSP Music Therapy Group provides a platform to connect through music. Music therapy is the relational, clinical, and evidence-based use of music to accomplish individualized healthcare goals, including (but not limited to) motor functioning, improving physiological outcomes, psychosocial support, and emotional expression. Music therapy encounters facilitated by board certified music therapists (MT-BC) hold space for the lived experiences of patients with atypical parkinsonian disorders and their caregivers, positioning them as active collaborators in their care in ways that may differ from the typical medical environment. Each music therapy group will be framed around a grounding theme, incorporating opportunities to listen, sing, and move to live music and explore music-based coping strategies in community with others. No prior music experience required! This group will be led by Kerry Devlin and Kyurim Kang, neurologically-specialized music therapists from Johns Hopkins University.
Meeting Time(s): 2nd Wednesday of each month at 8:00pm Eastern
Registration Link: https://us02web.zoom.us/meeting/register/tZUld-mhqzIiHNFXylFSnuvb-4o_0uW7Ydv_
Meeting Tel: +1 646 558 8656 Meeting ID: 818 0095 9865
Facilitator: Laurie Spindler, lspindler16@gmail.com
Meeting Time(s): 2nd Thursday of every month from 3:00pm-4:30pm EST
Registration Link: https://us02web.zoom.us/meeting/register/tZAvceitrzotGdfteL8WR2LX01SjASUJ1Efr
Meeting Tel: +1 646 558 8656 Meeting ID: 842 6151 1733
Facilitator: Diane Breslow, LCSW, dbreslow11@icloud.com and Ileen McFarland, ileen@earthlink.net
Meeting Time(s): 3rd Monday of each month at 8:00pm Eastern
Registration Link: https://us02web.zoom.us/meeting/register/tZUtf-CgrD0uG9CGa7yq3806EcOd8xhmUaqR
Meeting Tel: +1 646 558 8656 Meeting ID: 810 8982 6414
Facilitator: Cathy Chapman, 307-332-4144, cec@wyoming.com
Meeting Time(s): 3rd Tuesday of each month at 2:00pm Eastern
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 dbreslow11@icloud.com and Meghan Fera, LCSW meghansweeney1@gmail.com
Meeting Time(s): 3rd Tuesday of each month at 4:00pm Eastern
Registration Link: https://us02web.zoom.us/meeting/register/tZ0rceGsrTgjE9GT-VhSaf90fppuYOn7cDSA#/registration
Meeting Tel: 631-992-3221 Meeting ID: 447-016-877
Facilitator: Janet Edmunson, 508-308-4195, janet@janetedmunson.com
Meeting Time(s): 3rd Tuesday of each month at 8:00pm Eastern
Registration Link: https://attendee.gotowebinar.com/register/7620701206235337739
Meeting Tel: 562-247-8321 Meeting ID: 739-162-551
Facilitator: Janet Edmunson, 508-308-4195, janet@janetedmunson.com
Meeting Time(s): Third Wednesday of each month from 2:00-3:30pm EST April 2023 meeting will meet on the Fourth Wednesday, April 26th
Registration Link: https://us02web.zoom.us/meeting/register/tZUtf-qoqj0tE9wLCP-ddhcG3P1duHQPPv8a
Meeting Tel: 1 669 900 9128 Meeting ID: 810 8304 6798
Facilitator: Diane Breslow, LCSW, dbreslow11@icloud.com and Adriana Gonzalez, LCSW, acg008@health.ucsd.edu
Meeting Time(s): First Thursday of each month from 2:30pm-3:30pm EST and third Wednesday of each month from 6:30-8:00pm EST
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 njmont76@gmail.com and Janis Appel jappel1130@gmail.com
This group is for any diagnosed individuals, carepartners, families, friends, etc.
Meeting Time(s): 3rd Thursday of every month from 3:00pm-4:30pm EST
Registration Link: https://us02web.zoom.us/meeting/register/tZEtcO6sqzspHtXUtmqAN93amV39diWvEbw4
Meeting Tel: +1 646 558 8656 Meeting ID: 850 7745 0341
Facilitators: Jessica Shurer MSW, LCSW shurer@curepsp.org , Diane Breslow, LCSW dbreslow11@icloud.com
Meeting Time(s): 2nd & 4th Monday of each month from 7:30pm – 8:30pm Eastern (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 marsilk115@aol.com 609-265-7070
Meeting Time(s): 4th Wednesday of each month from 7:00pm – 8:00pm Eastern
Registration Link: https://us02web.zoom.us/meeting/register/tZIld–rqDsrHNVXbnPaifT8em6CI0IOSjSZ
Meeting Tel: 914-614-3221 Meeting ID: 732-403-054
Facilitator: Steve Garcia, 201-677-2542, advancedstagespsp@gmail.com
Meeting Time(s): 1st Monday of each month from 8:00pm – 9:00pm Eastern
Registration Link: https://us02web.zoom.us/meeting/register/tZIqf-uhrDgoHdfeY_XXwpyWe602VedTnWbK
Meeting Tel: +1 646 558 8656 Meeting ID: 867 8292 3273
Facilitator: Tom Tait, tom.tait@comcast.net, 856-725-2450
Online Support Groups
Many people cannot travel to meet with an in-person support group, or do not want to attend one, but are still looking for the comradery and comfort they provide. CurePSP recognizes this need and sponsors online support groups that allow participants the opportunity to interact with other patients, caregivers, and family members affected by PSP, CBD, MSA, or related brain diseases by using their computer, telephone (charges may be incurred), or both. By using a computer the facilitator is able to share their screen with the attendees, and can share documents, images, and other visual aids. This has proven to be a very helpful feature for the sessions and beneficial for those attending.
TO REGISTER AND USE:
- Click the meeting link for the group that suits you and register for the online program
- At the meeting time, use your computer to go online and follow the meeting link for your group
- Follow the prompts and choose to either listen in with your computer’s microphone and speakers or follow the instructions to dial in with your phone (instructions also included below)
For more information about the meeting you want to participate in, please contact the Facilitator. If you have other questions about support services, please email info@curepsp.org.
PSP/CBD/MSA 101: An Educational Support Series for the Newly Diagnosed
Meeting Times: October 19, 20, 21 from 3 – 4:15pmET
Registration Links:
October series:
https://us02web.zoom.us/meeting/register/tZMudOCoqTgvGNbTEV0MpV-Ho9FSwsH_9o0l
Facilitators: Joanna Teters teters@curepsp.org, Kelsey Woods woods@curepsp.org
Please register for only one month.
Please note that while we do offer other support groups for patients and families who are beyond the “early stages” of PSP, CBD or MSA, this group is reserved for those who are in the beginning stages of diagnosis and symptom development.
People with PSP/MSA/CBD and their Carepartners
Meeting Times: Third Thursday of each month from 3:00pm-4:30pm EST
Registration Link: https://us02web.zoom.us/meeting/register/tZEtcO6sqzspHtXUtmqAN93amV39diWvEbw4
Meeting Tel: +1 646 558 8656 Meeting ID: 850 7745 0341
Facilitators: Diane Breslow MSW, LCSW dbreslow11@icloud.com and Jessica Shurer MSW, LCSW jshurer@neurology.unc.edu
Carepartners of People with PSP/MSA/CBD
Meeting Times: Second Thursday of each month from 3:00pm-4:30pm
Registration Link: https://us02web.zoom.us/meeting/register/tZAvceitrzotGdfteL8WR2LX01SjASUJ1Efr
Meeting Tel: +1 646 558 8656 Meeting ID: 842 6151 1733
Facilitators: Diane Breslow MSW, LCSW dbreslow11@icloud.com and Ileen McFarland, ileen@earthlink.net
(Women Only) Carepartners of People with PSP/MSA/CBD Support Group
Meeting Time(s): First Thursday of each month from 2:30pm-4pm EST and Third Wednesday of the month from 6:30-8pm ET
Registration Link: https://us02web.zoom.us/meeting/register/tZIod–prDIiG93cgs_-lKhJJ-E2Et5mW3U0
Meeting Tel: +1 646 558 8656 Meeting ID: 865 0612 9819
Facilitators: Nancy Montgomery njmont76@gmail.com and Janis Appel jappel1130@gmail.com
(Men Only) Carepartners of People with PSP/MSA/CBD Support Group
Meeting Times: First Tuesday of each month from 8:00pm-9:00pm EST and first Thursday of each month from 5:00pm-6:00pm EST
Registration Link: https://us02web.zoom.us/meeting/register/tZIodu2qrjsqH9UvjxLyw__eP3Ep21zHKmvj
Meeting Tel: +1 646 558 8656 Meeting ID: 865 1420 0051
Facilitators: Tom Tait tom.tait@comcast.net and Bill Furlow billfurlownc@gmail.com
People with PSP
Meeting Times: 2nd & 4th Monday of each month from 7:30pm – 8:30pm Eastern
Meeting Link: https://us02web.zoom.us/meeting/register/tZUpce-rrD4qHdVzkfx0e8OSq94-UEu7dcaC
Meeting Tel: +1 646 558 8656 Meeting ID: 814 6632 5071
Facilitator: Margo Silk, marsilk115@aol.com
Carepartners of People with PSP
Meeting Time: 3rd Tuesday of each month at 8:00pm Eastern
Meeting Link: https://attendee.gotowebinar.com/register/7620701206235337739
Meeting Tel: 914-614-3221; Access Code: 732-403-054
Facilitator: Janet Edmunson, 508-308-4195, janet@janetedmunson.com
Carepartners of People with Advanced PSP
Meeting Time: 4th Wednesday of each month from 7:00pm – 8:00pm Eastern
Meeting Link: https://attendee.gotowebinar.com/register/8583419301916409613
Meeting Tel: 914-614-3221; Access Code: 732-403-054
Facilitator: Steve Garcia, 973-962-9356, advancedstagespsp@gmail.com
People with CBD and their Carepartners
Meeting Time: 1st Tuesday of each month at 6:00pm EST
Meeting Link: https://us02web.zoom.us/meeting/register/tZwrcu2vrTIsE9angifxZkh2PCyWI182Ouin
Meeting Tel: (213) 929-4232; Access Code: 611-128-331
Facilitator: Karry Forsythe, 903-683-0010, forsythe76@gmail.com
People with CBD and their Carepartners
Meeting Time: 3rd Tuesday of each month at 4:00pm Eastern
Meeting Link: https://attendee.gotowebinar.com/register/6157272128304268816
Meeting Tel: 631-992-3221; Access Code: 447-016-877
Facilitator: Janet Edmunson, 508-308-4195, janet@janetedmunson.com
People with MSA
Meeting Time: 3rd Monday of each month at 8:00pm Eastern
Meeting Link: https://us02web.zoom.us/meeting/register/tZUtf-CgrD0uG9CGa7yq3806EcOd8xhmUaqR
Meeting Tel: +1 646 558 8656 Access Code: 810 8982 6414
Facilitator: Cathy Chapman, 307-332-4144, cec@wyoming.com
Carepartners of People with MSA
Meeting Time: 1st Monday of each month from 8:00pm – 9:00pm Eastern
Meeting Link: https://us02web.zoom.us/meeting/register/tZIqf-uhrDgoHdfeY_XXwpyWe602VedTnWbK
Meeting Tel: +1 646 558 8656 Access Code: 867 8292 3273
Facilitator: Tom Tait, tom.tait@comcast.net, 856-725-2450
Stronger Together: Support for Gen Z Affected by PSP/CBD/MSA
Meeting Time: 4th Wednesday of each month at 3:00pm EST
Meeting Link: https://us02web.zoom.us/meeting/register/tZEtd-mrrTkiEtGEHGBS-uB-AmiKAocBkeUP
Meeting Tel: (646) 558-8656; Access Code: 850 0033 2885
Facilitator: Emma Wodwaski wodwasec@udmercy.edu and Nathan Wodwaski wodwasnj@udmercy.edu
Adult Children of People with PSP/CBD/MSA
Meeting Time: 2nd Wednesday of each month at 8:00pm EST
Meeting Link: https://us02web.zoom.us/meeting/register/tZUld-mhqzIiHNFXylFSnuvb-4o_0uW7Ydv_
Meeting Tel: +1 646 558 8656 ; Access Code: 818 0095 9865
Facilitator: Laurie Spindler, email lspindler16@gmail.com
After The Loss: A Bereavement Support Group for Carepartners
Meeting Times: 3rd Tuesday of each month at 2:00pm Eastern
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 MSW, LCSW dbreslow11@icloud.com and Meghan Sweeney, LCSW meghansweeney1@gmail.com
This group is intended only for those who have lost loved ones to PSP/MSA/CBD or a related disease in the past year.