https://us02web.zoom.us/meeting/register/tZAqf-CorTIiHdUFmS9Of21qfhFY5-CVJPZx

May
1
Sun
Ken’s Ride: A Ride for Hope @ Virtual Event
May 1 @ 12:00 am – May 31 @ 11:45 pm

Join CurePSP and Jan Appel for a Ride for Hope!

Throughout the month of May, CurePSP and Jan Appel will host a virtual fundraiser to honor Ken Appel – husband, father, and avid bike rider – to raise funds in support of those experiencing neurodegenerative diseases such as PSP, CBD, and MSA. 

Each day during his lunch, Ken Appel would ride along the beautiful Missisquoi Valley Rail Trail in St. Alban’s, Vermont. After Ken passed away in 2018 from PSP, his wife, Jan, decided to organize a local bike ride to honor Ken & support CurePSP. The very first Ken’s Ride happened in May 2019 and was a huge success!   

Wherever you live, you can enjoy Vermont in the Spring and have the opportunity to experience the Rail Trail while making a difference in the lives of patients and families affected by a neurodegenerative disease.This virtual race is 26.3 miles long (the length of the Missisquoi Valley Rail Trail) and can be done on your bike or via your choice of movement at any point throughout the month of May – either all at once or in a cumulative effort! 

ALL ABILITIES WELCOME! Whether you’re a professional biker or a casual yoga fan, we welcome you to participate. You can log any activity from walking to tai chi, and you’ll continue along the race route.  

New this year: The top 3 fundraisers will receive a special prize! Log your miles and then share your achievements with your friends & family. When they donate on your behalf, your total amount raised will go up! Don’t miss out on a chance to win these items!

REGISTER  Donate

May
26
Thu
Adult Children of People with PSP/CBD/MSA
May 26 @ 8:00 pm

Meeting Time(s): 4th Thursday 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

Jun
2
Thu
Women Carepartners of People with PSP/CBD/MSA Support Group
Jun 2 @ 2:30 pm – 3:30 pm

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

Men Carepartners of People with PSP/ CBD/ MSA Support Group
Jun 2 @ 5:00 pm

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

Jun
6
Mon
Carepartners of People with MSA
Jun 6 @ 8:00 pm – 9:00 pm

Meeting Time(s): 1st Monday of each month from 8:00pm – 9:00pm Eastern

Registration Link: https://us02web.zoom.us/meeting/register/tZIqfuhrDgoHdfeY_XXwpyWe602VedTnWbK

Meeting Tel: +1 646 558 8656 Meeting ID: 867 8292 3273

Facilitator: Tom Tait, tom.tait@comcast.net, 856-725-2450

Jun
7
Tue
People with CBD and their Carepartners
Jun 7 @ 6:00 pm

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

Men Carepartners of People with PSP/ CBD/ MSA Support Group
Jun 7 @ 8:00 pm

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

Jun
8
Wed
Adult Children of People with PSP/CBD/MSA
Jun 8 @ 8:00 pm

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

Jun
9
Thu
Carepartners of People with PSP/CBD/ MSA
Jun 9 @ 3:00 pm – 4:30 pm

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, LCSWdbreslow11@icloud.com and Ileen McFarland, ileen@earthlink.net

Jun
13
Mon
People with PSP
Jun 13 @ 7:30 pm – 8:30 pm

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

Jun
15
Wed
Flying Solo: A group for PSP/CBD/MSA patients living alone or without a carepartner.
Jun 15 @ 2:00 pm – 3:00 pm

Meeting Time(s): Third Wednesday of each month from 2:00-3:00pm EST
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 and Adriana Gonzalez, LCSW, 

Women Carepartners of People with PSP/CBD/MSA Support Group
Jun 15 @ 6:30 pm – 8:00 pm

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

Jun
16
Thu
Anyone Impacted by PSP/CBD/MSA
Jun 16 @ 3:00 pm – 4:30 pm

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

Jun
20
Mon
People with MSA
Jun 20 @ 8:00 pm

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

Jun
21
Tue
PSP/CBD/MSA 101: An Educational Support Group for the Newly Diagnosed
Jun 21 @ 1:00 pm

Meeting Time(s): June 21st, 22nd, 23rd at 1pm ET

Registration Link for April series: https://us02web.zoom.us/meeting/register/tZEuduyrpz0jGtfkRG_3IDP6NL6gfgHq9xTS 

Facilitators: Joanna Teters, teters@curepsp.org, and Kelsey Woods, woods@curepsp.org

After the Loss: A Bereavement Support Group for Carepartners
Jun 21 @ 2:00 pm

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 Sweeney, LCSW meghansweeney1@gmail.com

People with CBD and their Carepartners
Jun 21 @ 4:00 pm

Meeting Time(s): 3rd Tuesday of each month at 4:00pm Eastern

Registration Link: https://attendee.gotowebinar.com/register/6157272128304268816

Meeting Tel: 631-992-3221 Meeting ID: 447-016-877

Facilitator: Janet Edmunson, 508-308-4195, janet@janetedmunson.com

Carepartners of People with PSP
Jun 21 @ 8:00 pm

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

Jun
22
Wed
PSP/CBD/MSA 101: An Educational Support Group for the Newly Diagnosed
Jun 22 @ 1:00 pm

Meeting Time(s): June 21st, 22nd, 23rd at 1pm ET

Registration Link for April series: https://us02web.zoom.us/meeting/register/tZEuduyrpz0jGtfkRG_3IDP6NL6gfgHq9xTS 

Facilitators: Joanna Teters, teters@curepsp.org, and Kelsey Woods, woods@curepsp.org

Carepartners of People with Advanced PSP
Jun 22 @ 7:00 pm – 8:00 pm

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

Jun
23
Thu
PSP/CBD/MSA 101: An Educational Support Group for the Newly Diagnosed
Jun 23 @ 1:00 pm

Meeting Time(s): June 21st, 22nd, 23rd at 1pm ET

Registration Link for April series: https://us02web.zoom.us/meeting/register/tZEuduyrpz0jGtfkRG_3IDP6NL6gfgHq9xTS 

Facilitators: Joanna Teters, teters@curepsp.org, and Kelsey Woods, woods@curepsp.org

Adult Children of People with PSP/CBD/MSA
Jun 23 @ 8:00 pm

Meeting Time(s): 4th Thursday 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

Jun
27
Mon
People with PSP
Jun 27 @ 7:30 pm – 8:30 pm

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

Jul
4
Mon
Carepartners of People with MSA
Jul 4 @ 8:00 pm – 9:00 pm

Meeting Time(s): 1st Monday of each month from 8:00pm – 9:00pm Eastern

Registration Link: https://us02web.zoom.us/meeting/register/tZIqfuhrDgoHdfeY_XXwpyWe602VedTnWbK

Meeting Tel: +1 646 558 8656 Meeting ID: 867 8292 3273

Facilitator: Tom Tait, tom.tait@comcast.net, 856-725-2450

Jul
5
Tue
People with CBD and their Carepartners
Jul 5 @ 6:00 pm

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

Men Carepartners of People with PSP/ CBD/ MSA Support Group
Jul 5 @ 8:00 pm

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

Jul
7
Thu
Women Carepartners of People with PSP/CBD/MSA Support Group
Jul 7 @ 2:30 pm – 3:30 pm

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

Men Carepartners of People with PSP/ CBD/ MSA Support Group
Jul 7 @ 5:00 pm

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

Jul
11
Mon
People with PSP
Jul 11 @ 7:30 pm – 8:30 pm

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

Jul
13
Wed
Adult Children of People with PSP/CBD/MSA
Jul 13 @ 8:00 pm

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

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.