https://us02web.zoom.us/meeting/register/tZAqf-CorTIiHdUFmS9Of21qfhFY5-CVJPZx
The National Plan to End Parkinson’s Act is bipartisan legislation that will, for the first time, unite the federal government in a mission to prevent and cure Parkinson’s disease and other Parkinsonisms, including progressive supranuclear palsy, corticobasal degeneration, multiple system atrophy and Parkinson’s-related dementia. During his presentation, Mason will highlight how CurePSP and the Michael J. Fox Foundation for Parkinson’s Research collaborate through the Unified Parkinson’s Advocacy Council to pass this legislation and how you can get involved.
CurePSP advocacy volunteer Julie Balasalle will also join us for a quick update on how CurePSP has engaged the community in our growing advocacy efforts.
Your personal story goes a long way in helping Congress prioritize preventing and curing these diseases and ensuring quality care for people living with Parkinsonism. We hope you can join us in asking your questions and learning more about how you can help pass the National Plan!
Mason and Julie will have time at the end to answer viewers’ questions. Submit your questions via registration or email to events@curepsp.org.
This webinar will be recorded and available on our YouTube channel following the event. We will email all registrants a link when it’s ready to view.
CurePSP, the Rossy PSP Centre at University Health Network at the Krembil Brain Institute, part of the University of Toronto are collaborating to organize Neuro2024: The PSP and CBD International Research Symposium on October 24 – 25, 2024, at the Omni King Edward Hotel, in Toronto, Ontario, Canada, which aims to bring together experts from all over the world to share the latest scientific breakthroughs. The symposium will showcase PSP and CBD research conducted by distinguished neuroscientists and is open to all researchers interested in preclinical and clinical neuroscience. This hybrid symposium will offer both online and in-person learning opportunities!
The two-day scientific program will feature discussions and presentations covering multiple themes. Please check back soon for information on speakers, registration, abstracts, posters, and a full agenda.
This event is technical and is intended for a medical and research audience.
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.