Our Mission

To raise awareness, build community, improve care and find a cure for PSP, CBD and MSA.

Our Vision

A world free of neurodegenerative disease.

Our Commitment 

At CurePSP, diversity, equity, and inclusion is part of our history and our future. We consider it our mission to serve every family affected by prime-of-life neurodegenerative diseases — across nationalities, races, sexual orientations, gender identities, and creeds. Together, we will continue to build an inclusive and equitable culture that encourages, supports, and celebrates the diversity of our community to connect us closer to those we serve.

About Us

CurePSP is the leading non-profit organization dedicated to the awareness, care and cure for 3 neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA). As a catalyst for new treatments and a cure, we establish important partnerships and fund critical research. Through our advocacy and support efforts, we enhance education, care delivery, and quality of life for people living with PSP, CBD and MSA and their families. Science, community, and hope are at the heart of CurePSP’s mission and all of our services.

CurePSP is a registered 501(C)(3) charity within the United States. EID: 52-1704978. Our work is possible thanks to the generosity and support of those in our community and beyond.

The Diseases

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.

Care

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.

Consciousness

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. The CurePSP Guidebook is a major resource to help patients and their families manage the challenges of these diseases. CurePSP uses its website and social media pages to keep the community informed about the latest news and to encourage discussion. 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.

Cure

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.

Contact Us

CurePSP is here for you, so please get in contact. We can answer questions on various topics, we can also mail out a comprehensive information package on either PSP, CBD, or MSA for newly diagnosed people. To donate by check please make it out to CurePSP and mail it here:

CurePSP
1216 Broadway
2nd Floor
New York, NY 10001

Phone: 347-294-2873 (CURE)

E-mail: info@curepsp.org