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

Mar
2
Sat
The 21st Southwest Florida PSP Support Group Awareness and Memorial Walk @ Mackle Park, Marco Island, FL
Mar 2 @ 10:30 am
 

REGISTER     DONATE

Save the Date for the 21st Annual Southwest Florida PSP Support Group Awareness and Memorial Walk! The purpose of the Southwest Florida PSP Support Group Awareness and Memorial Walk is to honor those that have passed from these diseases, support those living with them now, raise awareness, educate the public, raise money to help find a cure, and let people know about our support group in Naples.

Our group is proud of the success of our walks over the years and is grateful to the public for their support. We have people coming from across the country and some from other countries. Everyone has fun on the walks. There will be food, music, a silent auction, and chances to win great prizes! For those that have never attended one of our walks, you won’t want to miss this one!

Registration for adults is $25, and for students is $10. The fee includes lunch and a CurePSP T-shirt. Should you have particular dietary requirements, kindly ensure to pack your own meal.

Please note that CurePSP has a new mailing address and all checks should go to 325 Hudson Street, 4th Floor, New York, NY 10013, and note that it is for the Marco Island Walk.

If you paid for a sign in the past and left it with us, you do not have to pay for that sign again.
If you would like a new sign however, please place a new order.

 

Mar
11
Mon
Tau Primer Webinar
Mar 11 @ 10:00 am

Ahead of Tau 2024, join us for a webinar covering the basics of this key topic, including a clinical overview of tauopathies by James Rowe, a review of the molecular basics of tau by Bess Frost and a presentation on tau biomarkers by Henrik Zetterberg. 

Tau2024 will take place virtually and in Washington, D.C. from March 25-26.  Dr. Kristophe Diaz, Executive Director and Chief Science Officer at CurePSP, will be a guest speaker at the global conference between top experts in tau research from academia, industry, government & philanthropy collaborating and discussing key issues impacting the tau research community. The event is proudly brought to you in partnership with the Alzheimer’s Association and the Rainwater Charitable Foundation. 

Register 

Mar
20
Wed
Ask the Expert: Navigating Advancing Symptoms and Stages of PSP, CBD and MSA (webinar)
Mar 20 @ 3:00 pm – 4:00 pm

“What to expect” and “how to plan ahead” are often difficult questions to answer, yet they remain important and frequent questions asked by our community members. In this webinar, we will discuss several of the key symptoms that may arise as people move farther in their journeys with a diagnosis of progressive supranuclear palsy (PSP), corticobasal degeneration/syndrome (CBD/CBS) or multiple system atrophy (MSA) as well as potential strategies for managing them. We will also talk about prognosis, end-of-life care, and optimizing quality of life regardless of where someone is in the disease course.

There will be time at the end for Dr. Fleisher to answer questions from viewers. Submit your questions via registration or email to events@curepsp.org.

This webinar will be recorded and will be available on our YouTube channel following the event. We will email all registrants a link when it’s ready to view.

Registration is free of charge!

Register

Donate

About Jori Fleisher, MD, MSCE 

Jori Fleisher, MD MSCE is an Associate Professor of Neurological Sciences at Rush University Medical Center. She is a movement disorders neurologist who leads the Rush Advanced Interdisciplinary Movement Disorders Supportive Care (AIMS) Clinic, the CurePSP Center of Care, Rush Lewy Body Dementia Association Research Center of Excellence, and co-directs the Rush Parkinson’s Foundation Center of Excellence. Dr. Fleisher completed her neurology, global health equities, movement disorders training, and a Master’s of Science in Clinical Epidemiology at the University of Pennsylvania. Dr. Fleisher has additional training in health services research, palliative care, and implementation science. Supported by the NIH, foundations, and philanthropy, Dr. Fleisher has several studies underway focused on designing and implementing novel models of care and support for individuals and families living with advanced movement and neurodegenerative disorders. She is deeply involved in advocacy, patient and family education, and mentoring through the American Academy of Neurology and other organizations. She is the recipient of several national awards, including the 2020 CurePSP Standout Achievement Award and Inspiration and Innovation to Cure Award.

Mar
25
Mon
Tau2024 Global Conference @ The Westin Washington, DC Downtown
Mar 25 – Mar 26 all-day

Tau2024 will take place virtually and in Washington, D.C. from March 25-26. The event is proudly brought to you in partnership with the Alzheimer’s Association and the Rainwater Charitable Foundation.

Learn More

Apr
2
Tue
Wellness Workshop: Holistic Health for the CurePSP Community (Day One)
Apr 2 @ 12:00 pm – 2:00 pm

Join us for the Wellness Workshop: Holistic Health for the CurePSP Community 

At CurePSP, we encourage everyone in our community to focus on many different aspects of wellness throughout their disease journey or the journey of their loved ones, including caring for their physical, mental, emotional, social and intellectual needs.   

Through the Wellness Workshop: Holistic Health for the CurePSP Community, 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 and interactive presentations related to dignity therapy, voice exercises, mental wellness and chair exercisesFollowing 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.   

More information about the virtual workshop can be found by scrolling below. 

AGENDA (IN EASTERN TIME)  

12:00 PM – 12:05 PM: Welcome & Opening Remarks  

12:05 PM – 12:35 PM: Empowering Well-Being: Insights from Patients and Care Partners 

Speaker: Fraya and Mike Krukar and Eugenia Palacio 

In this panel, we are joined by patients and care partners as they discuss mental wellness, staying active, and self-advocacy. Gain insights, practical tips, and inspiration for navigating your wellness journey. 

12:35 PM – 12:40 PM: Stretch Break 

12:40 PM – 1:10 PM: Yoga Chair Exercises

Speaker: Jess Bouma

This will be a rejuvenating session with a certified yoga instructor, guiding patients and care partners through interactive chair exercises. Discover the transformative power of movement tailored to enhance strength, flexibility and overall well-being. Join us for an inclusive experience that promotes health and vitality for all.

1:10 PM – 1:15 PM: Closing Remarks 

1:15 PM – 2:00 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. 

*Agenda is subject to change. 

We hope you can join usFor any questions, please email events@curepsp.org. 

Register

Donate

Apr
3
Wed
Wellness Workshop: Holistic Health for the CurePSP Community (Day Two)
Apr 3 @ 12:00 pm – 2:00 pm

Join us for the Wellness Workshop: Holistic Health for the CurePSP Community!  

At CurePSP, we encourage everyone in our community to focus on many different aspects of wellness throughout their disease journey or the journey of their loved ones, including caring for their physical, mental, emotional, social and intellectual needs.

Through the Wellness Workshop: Holistic Health for the CurePSP Community, 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 and interactive presentations related to dignity therapy, voice exercises, mental wellness and chair exercises.  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.

More information about the virtual workshop can be found by scrolling below. 

AGENDA (IN EASTERN TIME)  

12:00 PM – 12:05 PM: Welcome & Opening Remarks  

12:05 PM – 12:35 PM: Dignity Therapy and Life Review 

Speaker: Dirk Labuschagne, MDiv, MPH, BCC 

Some moments have the potential to shape our lives in unique ways. Reflecting on and sharing thoughts, ideas, and memories that are particularly relevant and meaningful can have benefits that extend beyond our own lives to those we love. Dignity Therapy is a life-review intervention for people facing advanced illness. In this session, central aspects of this intervention will be shared, as well as ways to engage in it yourself. 

12:35 PM – 12:40 PM: Stretch Break 

12:40 PM – 1:10 PM: Speak Out! Speech Therapy and Voice Exercises 

Speaker: Gwen Nolan, MS, CCC-SLP 

There is so much hope for people with neurodegenerative diseases to regain and retain clearer speech, stronger voices, and safer swallowing. The nonprofit Parkinson Voice Project developed the effective SPEAK OUT! Therapy Program. An interactive demonstration of six voice exercises will be presented, and participants will be encouraged to practice with intent. Gwen will explain the rationale for each exercise and share Parkinson Voice Project’s resources for speaking and living with intent. 

1:10 PM – 1:15 PM: Closing Remarks 

1:15 PM – 2:00 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. 

*Agenda is subject to change. 

We hope you can join usFor any questions, please email events@curepsp.org. 

Register

Donate

Apr
8
Mon
PSP/CBD/MSA 101 (Day 1/3)
Apr 8 @ 1:00 pm – 2:00 pm

PSP/CBD/MSA 101 is an online educational support group designed for individuals who are relatively newly diagnosed with PSP, CBD or MSA and their care partners/significant others. In a series of three meetings, PSP/CBD/MSA 101 will address issues of concern specific to this population. Please note that while we do offer other support groups for patients and families who are beyond the “early stages” of disease progression, this group is reserved for those who are in the beginning stages of diagnosis and symptom development.

Register Here

Apr
9
Tue
PSP/CBD/MSA 101 (Day 2/3)
Apr 9 @ 1:00 pm – 2:00 pm

PSP/CBD/MSA 101 is an online educational support group designed for individuals who are relatively newly diagnosed with PSP, CBD or MSA and their care partners/significant others. In a series of three meetings, PSP/CBD/MSA 101 will address issues of concern specific to this population. Please note that while we do offer other support groups for patients and families who are beyond the “early stages” of disease progression, this group is reserved for those who are in the beginning stages of diagnosis and symptom development.

Register Here

Apr
10
Wed
PSP/CBD/MSA 101 (Day 3/3)
Apr 10 @ 1:00 pm – 2:00 pm

PSP/CBD/MSA 101 is an online educational support group designed for individuals who are relatively newly diagnosed with PSP, CBD or MSA and their care partners/significant others. In a series of three meetings, PSP/CBD/MSA 101 will address issues of concern specific to this population. Please note that while we do offer other support groups for patients and families who are beyond the “early stages” of disease progression, this group is reserved for those who are in the beginning stages of diagnosis and symptom development.

Register Here

Oct
24
Thu
Neuro2024: The PSP and CBD International Research Symposium @ Omni King Edward Hotel
Oct 24 – Oct 25 all-day

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. 

Register

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.