Dear valued member of the CurePSP community,
As you know, building a support system is essential to living the best life possible with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD) or multiple system atrophy (MSA). For many, this includes professional care services for additional assistance and companionship for the diagnosed person and a break, or respite, for family care partners.
Most non-medical care in the U.S. is paid for privately and the costs are steadily increasing. During my more than a decade as a social worker in healthcare and geriatrics, I have found that hiring and affording caregiving services are among the most stressful decisions and barriers to comprehensive support for many individuals and families.
The CurePSP Quality of Life Respite Grant provides 60 hours of professional in-home care. At the time of writing you this email, 205 families have received this grant since the program’s founding in 2016. Many of them have told us that it gifted them “peace of mind,” “a chance to recharge” or “the ability to keep my loved one at home longer.” It is our honor to offer this unique and tangible source of support and our goal to ensure the sustainability and growth of the program.
In early 2023, we evaluated the program’s changing needs by examining its evolution. Our analysis revealed an over 250% increase in applications compared to three years ago. Moreover, the average cost of agency-based care used through the program increased by 15% since 2021 and by 25% since 2020.
We need our CurePSP community now, more than ever, to share the care for one another.
The CurePSP Quality of Life Respite Grant is made possible by the generosity of those personally touched by PSP, CBD or MSA. This includes the Levien and Hohn families, who created legacy funds in memory of their loved ones, and the hundreds of others who have chosen to donate to the program as a way to show up for CurePSP’s mission and community. We need your help to expand the reach of the program and the number of grants we can provide as well as to meet the rising costs of care. With your help, we can assist more families – it’s as simple as that!
Thank you for your critical role in offering hope and support for others who are living with or caring for PSP, CBD or MSA.
Because hope matters,
Jessica Shurer, MSW, LCSW
Director, Clinical Affairs and Advocacy