Event Calendar
CurePSP has a variety of events for patients, families, care partners, physicians and allied healthcare professionals. In addition, our volunteers run a variety of fundraising events that are essential to supporting our mission. Please review this schedule for events that may be in your area and would be of interest to you.
If you would like to put on an event, please contact Jaclyn Zendrian, Vice President – Events, at zendrian@curepsp.org.
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
