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:
Progressive supranuclear palsy (PSP)
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.
Corticobasal degeneration (CBD)
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.
Multiple system atrophy (MSA)
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. CurePSP’s first affiliate, CurePSP Canada, also assists Canadians afflicted with the diseases.
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 policymaking. 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 diseases;
- 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 Eloise H. Troxel Memorial Brain Bank at the Mayo Clinic in Jacksonville, Florida, supported by CurePSP, provides researchers with essential brain tissue samples. Our Patient Engagement Program (PEP) aids the clinical trials that are essential to bringing drugs to market.
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.