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

Aug
29
Mon
Community Conversations: A Son’s Reflections on the PSP Journey (Webinar) @ Virtual Event
Aug 29 @ 4:00 pm – 5:00 pm

Join Rafi Stern and Jessica Shurer for a conversation and Q&A on navigating the PSP journey as a carepartner. 

Rafi Stern did not envision splitting his weeks between Cornell Law School and New York City. Each week he would drive home to NYC from Ithaca to help care for his mother, Suzanne Wasserman. Wasserman was a well-known historian, professor, writer, and film director. Rafi was only in his mid-twenties when she received the diagnosis of PSP, and he never questioned his role in supporting his mother. Now, five years after her passing, Rafi wants to share his experience and reflections as a son of someone with PSP and a young carepartner, hoping to lend advice and support to families living with neurodegenerative diseases now.

This will be a live conversational-style webinar, moderated by Jessica Shurer, MSW, LCSW, Director of Clinical Affairs and Advocacy at CurePSP. There will be time at the end for Rafi to answer questions from viewers.

Submit your questions to sullivan@curepsp.org

Register here

Sep
7
Wed
Ask the Expert: Advance Care Planning & Navigating Future Health Care Decisions (Webinar) @ virtual event
Sep 7 @ 2:00 pm – 3:00 pm


Join CurePSP for Ask the Expert on Advance Care Planning & Navigating Future Health Care Decisions!

Navigating the uncertainties of the future when living with PSP, CBD and MSA can be overwhelming. In this webinar, Adriana Gonzalez, LCSW, palliative care-specialized social worker of the CurePSP Center of Care at the University of California San Diego, will provide information on the types of decisions you or your family may be faced with in a medical emergency and offer you the tools to have open conversations with your support network and document your wishes. 

About Adriana Gonzalez, LCSW 

Adriana  Gonzalez is a graduate of San Diego State University obtaining her master’s degree in social work and is licensed in the state of California. As the social worker at the Parkinson and  other  Movement  Disorders  Center at the University of California,  San Diego. Adriana  works collaboratively  with her team to meet the changing needs of people living with a movement disorder and their family.   As part of her work at the center she  has developed a  Latino outreach program  & collaborated with support groups and community organizations to provide education about movement disorders such as Parkinson’s Disease, PSP, MSA and CBD.    Adriana is a strong advocate for supporting patients in maintaining their  quality of life throughout their disease journey from diagnosis to advancing disease.  

Registration is free of charge.  E-mail info@curepsp.org with any questions. 

The links to the webinar will be emailed to registrants after registration, two hours before the event, and fifteen minutes before the event. 

To support CurePSP’s mission of care, consciousness, and cure for prime of life neurodegenerative brain diseases please go to this link or donate at registration checkout. 

Register

Sep
15
Thu
Hope as Big as Texas @ Virtual Event
Sep 15 @ 5:30 pm – 7:00 pm


This year’s Hope as Big as Texas event celebrates Hispanic Heritage and Hope!

This virtual celebration will explore the connection between caregivers and Hispanic artists, both applying creativity, inspiration, and commitment to someone and something they love and cherish. The Quality of Life fund is committed to providing in-home respite care support through Quality of Life grants to families of those diagnosed with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), or multiple system atrophy (MSA). Studies have shown that these diseases affect all ethnicities equally. However, they are often underdiagnosed in rural and underserved areas without a Movement Disorders Specialist.

Each grant provides $1,500 for 54 professional caregiving hours through Griswold Home Care or an alternative home care agency.

Bringing Respite Care to those in Need

At last year’s Hope as Big as Texas, we were fortunate to raise enough funds to provide support to 40 families with PSP, CBD, or MSA, bringing our total to over 100 families served! Studies show that even a brief break or relief from caregiving responsibilities can improve the daily life of caregivers and their loved ones diagnosed with the disease. The importance of these services and the critical role of respite care are evident now more than ever. Our fight to find treatment and a cure is equally steadfast!

Learn more about the Cherie Levien Quality of Life Fund on this page.

Each dollar of your donation will be matched up to $35,000, thanks to the generosity of sponsoring donors!

If you would like to attend the event, though unable to afford a ticket, please use promo code TEXAS22 and come as our guest. The event will be broadcast in English and Spanish.

register  donate

Oct
24
Mon
Neuro2022: The CurePSP International Research Symposium @ Hybrid and In-person
Oct 24 @ 8:00 am – Oct 25 @ 5:00 pm

Save the Date for the 2022 CurePSP International Research Symposium featuring leaders from academia and industry in clinical and preclinical science relevant to PSP, CBD, and tauopathies!

CurePSP conducts an International Research Symposium that brings together international investigators to hear about and discuss the latest scientific advances relevant to neurodegeneration with a particular focus on rare tauopathies such as PSP and CBD. The Symposium highlights research by leading neuroscientists and welcomes all researchers with an interest in preclinical and clinical neuroscience.

Sleeping Room Block

Reservations at the Gansevoort Hotel room block can be made immediately by telephone, email, or via the Hotel’s website. Queen rooms are $425.00 a night (without tax, etc.). Booking instructions are noted below.

As a reminder, all reservations should be made by 5:00 pm ETon September 23, 2022.

 

This symposium will be a hybrid of online learning (for those unable to attend) and in-person!

This event is technical in nature and is intended for a medical and research audience.

REGISTER 

Neuro2022: The CurePSP International Symposium Poster Reception @ Pier 59
Oct 24 @ 6:00 pm – 9:00 pm

Join CurePSP for the Neuro2022 Poster Reception!

During the CurePSP Internation Research Symposium international investigators hear about and discuss the latest scientific advances relevant to neurodegeneration, focusing on rare tauopathies such as PSP and CBD. The first night of the symposium kicks off with a poster reception to give attendees a visual overview of the projects being researched. The posters facilitate discussion on crucial scientific information and developing advances in neuroscience. 

Only those attending the symposium may submit an abstract and poster. Information on that process is available here

Attire is business or business casual. This reception will not be available for online viewing.

Sleeping Room Block

Reservations at the Gansevoort Hotel room block can be made immediately by telephone, email, or via the Hotel’s website. Queen rooms are $425.00 a night (without tax, etc.). Booking instructions are noted below.

As a reminder, all reservations should be made by 5:00 pm ETon September 23, 2022.

 

*Registration for the International Research Symposium also includes access to the poster reception and there is no need to register here separately. 

register

 

Mar
18
Sat
The 20th Annual CurePSP Awareness and Memorial Walk @ Mackle Park, Marco Island, Florida
Mar 18 @ 9:00 am


Save the Date for the 20th Anniversary of the CurePSP Awareness and Memorial Walk!

The CurePSP Awareness and memorial walk is sponsored by The SW Florida Support Group (for all affected by PSP, CBD, and MSA). The purpose of the CurePSP Awareness & Memorial Walk is to honor those that have died from these diseases, support those suffering 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 we are 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, entertainment, 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!

Our 20th Annual CurePSP Awareness and Memorial Walk will be held on Saturday, March 18th, 2022, at Mackle Park, Marco Island, Florida.

Stay tune for more information on how to 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.