Awareness, education, care and cure for devastating prime of life neurodegenerative diseases.
A world free of neurodegenerative disease.
Neurodegeneration strikes when we least expect it. Prime of life neurodegeneration is a spectrum of relatively rare diseases that often afflict people during productive, active years and lead to debilitating symptoms and early death. They are generally categorized as frontotemporal disorders and are characterized by progressive personality, behavior, language, and motor decline. These diseases create a level of functional impairment that significantly compromises the ability to carry out activities of daily living. There is currently no treatment and no cure, but there is hope. Research into these diseases may be a gateway to understanding and ultimately preventing.
CurePSP is the leading organization within this disease spectrum, providing support for patients, families and caregivers; awareness and education to healthcare professionals; and global research funding. Current research into prime of life diseases, especially progressive supranuclear palsy (PSP), is showing great promise for unlocking the secrets of neurodegeneration.
CurePSP is a registered 501(C)(3) charity within the United States. EID: 52-1704978
CurePSP is a registered 501(C)(3) Charity within the United States. EID: 52-1704978
CurePSP is the leading nonprofit organization working to improve awareness, education, care and cure for devastating prime of life neurodegenerative diseases. These include progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), multiple system atrophy (MSA), and others.
They often strike when people have careers, family responsibilities, and active lives. Their symptoms are incapacitating and there are no known causes, treatments, or cures.
Research has shown that there are important links between prime of life diseases and more common neurodegenerative conditions, such as Alzheimer’s disease and Parkinson’s disease. Your support will help advance this research, provide resources for families and caregivers of patients, and better educate the healthcare community. Together we are unlocking the secrets of brain disease.
CurePSP is a not-for-profit 501(c)(3) organization. Gifts and pledges of support are encouraged and donations are tax deductible to the extent allowed by law.
CurePSP currently focuses primarily on three prime of life neurodegenerative diseases:
Affects roughly 17,500 people in the United States, only 25% of whom are accurately diagnosed. Symptoms include loss of balance, changes in personality, weakened downward eye movements, slurred speech, and difficulty swallowing.
Affects 2,000-3,000 people in the United States, only 25% of whom are accurately diagnosed. Symptoms include difficulty with balance and speech, stiffness or clumsiness in upper or lower extremities, and dementia.
Affects roughly 13,000 people in the United States, only 25% of whom are accurately diagnosed. Symptoms include excessive changes in blood pressure when altering position (sitting, standing, lying down), impaired speech, and difficulty swallowing, breathing, and eating.
All diseases lead to progressive decline, and although symptomatic treatment exists, there is no known cause or cure.
CurePSP strives to provide those in need with support and hope. We encourage and organize activities that foster face-to-face communication and exchange while providing comfort and mutual benefit to those who are caregivers, family members, friends, and patients with PSP, CBD, MSA, and other prime of life diseases.
Our face-to-face support groups span the U.S. and are expanding in many more metropolitan areas. In addition to those groups, CurePSP maintains a directory of peer supporters – volunteers who are available to offer support by phone or email. We provide training and ongoing support for these generous and committed volunteers.
The organization holds annual family conferences in different locations across the United States that provide patients and families with the opportunity to learn about the diseases, find ways to manage their difficult challenges and connect with others who are also struggling with the diseases.
Volunteers are an essential part of CurePSP. Their input and energy help us expand the services we offer and the geographical areas we reach.
Raising awareness about the diseases and educating the public is a top priority. We supply up-to-date information about PSP, CBD, and MSA to patients, caregivers and healthcare professionals. CurePSP uses its website and social media pages to keep the community informed about the latest news and to encourage discussion. CurePSP’s Guide for People Living with PSP, CBD and Related Brain Diseases is a major resource to help patients and their families manage the challenges of these diseases. CurePSP also hosts free webinars on numerous topics and maintains a large library of content available at any time.
Many patients struggle to receive an accurate diagnosis. CurePSP strives to better educate healthcare professionals by developing training material, tools to aid diagnosis, and other resources so that patients and their families will receive better care and symptom management.
Advocating for those with prime of life neurodegenerative diseases will lead to better policy making. CurePSP actively works with governmental agencies and the pharmaceutical industry on behalf of patient and caregiver needs.
CurePSP devotes significant funding to research. This research has three goals:
- Identify the cause and development of PSP, CBD, MSA, and other prime of life disease
- Develop practical diagnostic tests that would be effective in the early stages of the diseases
- Develop treatments that will prevent, slow, halt, or even reverse the progression of the diseases
CurePSP funds a variety of research programs in tau immune therapy, genetics, stem-cell applications, and other important areas. The Brain Bank at the Mayo Clinic in Jacksonville, Florida, supported by CurePSP, provides researchers with essential brain tissue samples.
CurePSP’s Venture Grants open up new avenues of exploration by providing “seed capital” to investigators with exciting new ideas. Programs supported by CurePSP may eventually lead to treatment and cure.