https://us02web.zoom.us/meeting/register/tZAqf-CorTIiHdUFmS9Of21qfhFY5-CVJPZx
Join us for the CurePSP Wellness Workshop: Holistic Health for PSP, CBD and MSA!
At CurePSP, we encourage everyone affected by PSP, CBD and MSA to focus on many different aspects of wellness throughout their disease journey, including caring for their physical, mental, emotional, social and intellectual needs.
Through the Wellness Workshop: Holistic Health for PSP, CBD and MSA, you will discover new self-care techniques, interact with others who are also searching for ways to maintain wellness, and learn which changes you can make to your lifestyle that will make the greatest impact on your overall health.
This year’s virtual Wellness Workshop will consist of educational presentations related to holistic wellness, finding time for self-care, breathwork, seated movement and music therapy. Following the presentations, participants will be broken out into interactive discussion groups to connect with other attendees, talk through the subjects covered during the workshop and reflect on what wellness means to them.
Registration is free of charge.
All sessions will be recorded and posted on our YouTube channel after the event.
AGENDA* (IN EASTERN TIME)
12:00 PM – 12:05 PM: Welcome & Opening Remarks
Speaker: Joanna Teters
12:05 PM – 12:35 PM: Thriving Through the Constantly Changing Journey of PSP, CBD and MSA
Speaker: Janet Edmunson
In this session, Janet Edmunson will share her insights to support those affected by PSP, CBD and MSA who are working through the day-to-day and emotional difficulties associated with these diseases. From her experience as a caregiver and long-time support group facilitator, she will discuss how to thrive while adjusting to evolving symptoms and lifestyle changes, prioritize self-care for better sleep and wellbeing and discover the gifts throughout this journey.
12:35 PM – 1:05 PM: Seated Movement & Breathwork
Speaker: Lonnie Poland, PT
Seated movement and breathwork are wonderful ways for those with mobility limitations to maintain mind-body connection. In this session, Lonnie Poland, PT will share her expertise on the practice of gentle seated movement, conscious breathing and mindfulness awareness.
1:05 PM – 1:40 PM: Break
1:40 PM – 2:10 PM: Music Therapy
Speakers: Kerry Devlin, MMT, LPMT, MT-BC and Kyurim Kang, PhD, LPMT, MT-BC, NMT
In this hands-on presentation, participants will learn how music therapy can support physical and psychosocial wellness. Presenters will demonstrate wide-ranging music experiences, tools and music-based exercises for use at home.
2:10 PM – 2:15 PM: Closing Remarks
Speaker: Jessica Shurer, MSW, LCSW
2:15 PM – 3:00 PM: Interactive Discussion Groups via Zoom
During these discussion groups, you’ll have the opportunity to connect with other event attendees, talk through the subjects covered during the workshop and reflect on what wellness has meant to you throughout your disease journey.
Julie Balasalle and Salin Geevarghese discovered they had much they could relate on when they were first connected. Professionally, both have dedicated their careers to larger scale advocacy and personally, both of their mothers are diagnosed with corticobasal degeneration (CBD), a very rare “atypical parkinsonism” disease closely related to progressive supranuclear palsy (PSP). In early 2022, both Julie and Salin reached out to CurePSP wanting to be involved in the cause.
Julie is a social worker with a specialization in legislative lobbying and government relations. Salin’s career has focused on social policy change across public, private, nonprofit and philanthropic sectors, including as a senior-appointed leader in the U.S. Department of Housing and Urban Development during the Obama Administration. For CurePSP, their passion and expertise came right at a time when the organization was strategizing and prioritizing their advocacy and awareness-raising efforts. In 2022, CurePSP joined the Unified Parkinson’s Advocacy Council and quite serendipitously, around the same time, the National Plan to End Parkinson’s was introduced in Congress. This bipartisan bill is the first ever solely devoted to coordinating federal efforts and funding for research, treatments and support for Parkinson’s disease and related diseases, including PSP, CBD and multiple system atrophy (MSA) – CurePSP is currently creating a toolkit for community members to advocate for this and other bills.
Julie and Salin will walk us through how the PSP, CBD and MSA community can become educated and empowered to participate in legislative advocacy and will tell their stories of what advocacy has meant to them as they care for their mothers (for Julie, from afar and for Salin, in his home). This conversational-style webinar will be moderated by Jessica Shurer, MSW, LCSW, CurePSP’s Director of Clinical Affairs and Advocacy. There will be time at the end for Julie and Salin to answer questions from viewers.
This webinar will be available on the CurePSP YouTube channel after the event. We will email registrants with the link when it is ready.
Submit your questions for Salin and Julie via registration or email to events@curepsp.org
Registration is free of charge!
Speakers
Salin Geevarghese
Julie Balasalle
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.