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

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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. 

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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 $25,000, 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.

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