CurePSP

What CurePSP does

CurePSP, Inc. is a 501(c)(3) nonprofit organization founded in 1993 and headquartered at 325 Hudson Street, 4th Floor, New York. It is the leading U.S. patient-advocacy organization focused on three rare neurodegenerative tauopathies and synucleinopathies: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA). The organization operates around three pillars — care, consciousness, and cure — and serves four primary segments: patients and care partners, healthcare professionals, researchers, and donors/supporters. It runs a network of 25 designated Centers of Care across the U.S. and Canada (established 2017) providing specialized clinical care, and partners with the Mayo Clinic Brain Bank, which houses over 2,000 PSP brains preserved over more than 30 years and shared with researchers nationally and internationally.

CurePSP's programmatic portfolio includes the Brain Donation Assistance Program (up to $1,000 in expense reimbursement via Mayo Clinic), the Quality of Life Respite Program (100 hours of professional in-home care at up to $40/hour, ~$4,000 grant value per family), the CARES grant program in its fourth year awarding $155,000 to four projects across seven institutions in 2026, and Pathway/Pipeline research grants of up to $100,000 for one- or two-year studies. Education and awareness channels include The Collective Mind podcast (Season 3 launching July 2026), CurePSPTV on YouTube, a resource library of downloadable booklets and audiobooks in multiple languages, and continuing-education partnerships with Shirley Ryan AbilityLab and the Parkinson's Foundation. The organization is led by CEO Kristophe Diaz, PhD.

CurePSP's business model is donation-driven rather than commercial. Revenue is generated through individual donations (processed via Convio), tribute gifts, fundraising events (e.g., Giving Tuesday), and a Shopify-hosted merchandise shop. It also accepts pharmaceutical industry contributions as unrestricted grants, activity sponsorships, or service compensation, disclosed under its Policy for Engaging with Industry. All programmatic services to patients and families are provided free of charge. Recent strategic activity includes co-organization of the Tau Global Conference 2026 with the Alzheimer's Association and Rainwater Charitable Foundation, a forthcoming Neuro2026 symposium with PSPA UK, and appointment of Director of Clinical Affairs Jessica Shurer to the inaugural National Parkinson's Project Advisory Council in April 2026.

Name

CurePSP

Legal name

CurePSP, Inc.

Website

https://psp.org

Company type

Private

Founded year

1993

Operating status

Operating

Short description

CurePSP is a 501(c)(3) nonprofit founded in 1993 that supports patients, families, and researchers affected by PSP, CBD, and MSA through a 25-center care network, a brain donation program tied to the Mayo Clinic Brain Bank, respite and research grants, and federal advocacy.

Ownership category

akta.pro rank

Product category

Neurodegenerative Disease Nonprofit Patient Advocacy

NAICS

Voluntary Health Organizations (813212), Services for the Elderly and Persons with Disabilities (624120), Other Individual and Family Services (624190)

SIC

Services-Social Services (8300), Services-Misc Health & Allied Services, Nec (8090)

akta.pro primary industry

Public–Private Partnerships (PPPs) for Global Health (HLAJAOAD)

akta.pro secondary industry

Global Health Research, Clinical Trials & Product Development Partnerships (PDPs) (HLAJAOAM)

Keywords

• Neurodegenerative disease advocacy
• Patient support services
• Medical research grants
• Rare disease awareness
• Caregiver respite programs

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Personnel, Operations, Marketing or Sales, Technology or R&D, Others

Revenue model

1. Donations and Fundraising: CurePSP operates as a 501(c)(3) nonprofit organization funded primarily through donations from individuals, families, and supporters. The organization conducts fundraising campaigns including Giving Tuesday and general donation drives through its website and Convio platform.

Pricing tiers

Go-to-market motion2 records

Distribution channels4 records

Marketing channels8 records

Core offering

CurePSP is a 501(c)(3) nonprofit organization that raises awareness, funds research, and provides patient and family support services for three rare neurodegenerative diseases: progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA). Its core offerings include educational resources, the Quality of Life Respite Program, the Brain Donation Assistance Program, the Centers of Care Network, and research grant programs (CARES, Pathway, and Pipeline grants).

Product overview

CurePSP is a nonprofit organization offering a comprehensive suite of educational, supportive, and research-focused services for people affected by progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), and multiple system atrophy (MSA). The organization operates primarily as a disease-focused advocacy and support organization rather than a technology product company. Its offerings include: The Collective Mind Podcast and CurePSPTV for awareness and education; a Resource Library and Audiobook Library containing downloadable materials on disease management; the Brain Donation Assistance Program providing diagnostic services; the Quality of Life Respite Program offering in-home care grants; a Centers of Care Network of 25+ designated medical institutions; CARES Grants and Pathway/Pipeline Grants funding research and care initiatives; Healthcare Professional Resources including continuing education; and Assistive Devices directories. The organization connects these programs through its website at psp.org, serving patients, families, healthcare professionals, and researchers.

Differentiator

Problem solved

Functional benefit

Brands

• Unlocking the Secrets of Brain Disease: Registered trademark of CurePSP, Inc.
• Because Hope Matters

Products and services

• Centers of Care Network Network of 25 designated medical institutions across the U.S. and Canada providing specialized clinical care for PSP, CBD, and MSA patients, established in 2017 with criteria centered on leadership in specialized therapies, comprehensive support services, and clinical research.
• CARES Grants (Collaborative Approaches to Resources, Education and Support) Grant program fostering partnerships within the Centers of Care network to address unmet care needs of the atypical Parkinsonism community, now in its fourth year with $155,000 awarded in 2026 across four projects at seven medical institutions in the U.S. and Canada.
• Pathway and Pipeline Grants Research funding program providing grants of up to $100,000 for one- or two-year studies on PSP and CBD, with applications evaluated by CurePSP's Scientific Advisory Board.
• Brain Donation Assistance Program Program providing up to $1,000 reimbursement for brain donation costs through the Mayo Clinic Brain Bank, enabling neuropathological diagnosis and supporting research into PSP, CBD, and MSA.
• Quality of Life Respite Program Grant program providing 100 hours of professional, agency-based in-home care for people living with PSP, CBD or MSA, covering costs up to $40/hour. Families with combined annual income under $90K and no long-term care insurance are eligible.
• Support Groups Peer support groups for patients and families affected by PSP, CBD, and MSA, providing emotional support, shared experiences, and community connection.
• Bereavement Resources Resources and support materials for families who have lost loved ones to PSP, CBD, or MSA.
• Resource Library Digital library of downloadable educational materials including booklets, fact sheets, workbooks, and guides for PSP, CBD, and MSA patients and families.
• Audiobook Library Audiobook versions of CurePSP's Some Answers booklets providing accessible information on PSP, CBD, and MSA symptoms and management.
• Healthcare Professional Resources Resources for physicians and healthcare professionals including continuing education programs, best practices guidelines, and diagnostic tools for PSP, CBD, and MSA, delivered in partnership with the Parkinson's Foundation and Shirley Ryan AbilityLab.
• Assistive Devices and Adaptive Equipment Directory Curated list of assistive devices and adaptive equipment recommendations for patients and families dealing with PSP, CBD, and MSA symptoms.
• CurePSPTV (YouTube Channel) YouTube channel featuring educational and awareness video content about PSP, CBD, and MSA.
• The Collective Mind Podcast Podcast series featuring stories from care partners, advocates, physicians, scientists, researchers, and staff members discussing PSP, CBD, and MSA. Currently in Season 3 with monthly episodes released on Apple Podcasts, Spotify, Amazon Music, and iHeart.
• Annual Reports and Financial Statements Annual reports and audited financial statements documenting CurePSP's activities, finances, and impact.

Quantifiable outcome

• 25 designated Centers of Care providing specialized care for PSP, CBD, and MSA patients across U.S. and Canada
• +3 more outcomes

Named customers15 records

Segments5 records

Ideal customer profiles2 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

Nine partnerships are on record, tiered core and minor.

• PSPA (UK)coreStrategic or Co-development Partner · 1 November 2026Co-organizer of Neuro2026: The PSP and CBD International Research Symposium in London, bringing together the PSP and CBD research community with early clinical trial results expected.
• Parkinson CanadacoreStrategic or Co-development Partner · 22 June 2026Co-funding partnership for CARES grants supporting research and care initiatives for PSP, CBD, and MSA in Canada. Two projects are co-funded including research on barriers to diagnosis in underserved populations and evaluation of virtual wellness programs.
• Alzheimer's AssociationcoreStrategic or Co-development Partner · 14 May 2026Co-organizer of Tau Global Conference 2026, bringing together approximately 400 in-person attendees and 800 virtual participants including researchers, clinicians, and people living with PSP, CBD and related tauopathies.
• Rainwater Charitable FoundationcoreStrategic or Co-development Partner · 14 May 2026Co-organizer of Tau Global Conference 2026 and provider of the Rainwater Prize honoring researchers at the Mayo Clinic Brain Bank. Partnership advancing tau research and awareness.
• Mayo Clinic Brain BankcoreStrategic or Co-development PartnerHosts CurePSP's Brain Bank with over 2,000 PSP brains of frozen and fixed tissue. Provides neuropathologic evaluation at no charge and generates diagnostic reports for families. Tissue is shared with researchers nationally and internationally.
• Parkinson's FoundationcoreStrategic or Co-development PartnerPartnership on Atypical Parkinsonism Podcast Series and online course 'Caring for Your Patients with Atypical Parkinsonism' providing continuing education credits for healthcare professionals.
• Shirley Ryan AbilityLabminorStrategic or Co-development PartnerPartnership on on-demand webinar 'Rehabilitation Implications of Atypical Parkinsonisms' providing continuing education credits for physical therapists, occupational therapists, and speech-language pathologists.
• CND Life SciencesminorStrategic or Co-development PartnerCorporate supporter of the online course 'Caring for Your Patients with Atypical Parkinsonism' developed in partnership with Parkinson's Foundation.
• National Parkinson's Project Advisory CouncilcoreOthersJessica Shurer, Director of Clinical Affairs and Advocacy at CurePSP, appointed to the inaugural National Parkinson's Project Advisory Council under the National Plan to End Parkinson's Act. Council will evaluate federal programs, advise HHS Secretary, and deliver recommendations on research priorities and care access strategies.

Scale indicators6 records

Recent moves6 records

Expansion highlights6 records

Direct peers

• Alzheimer's Association: The largest U.S. voluntary health organization for dementia and a core co-organizer of the Tau Global Conference with CurePSP. Shares research funding mechanisms and federal advocacy, with overlapping interest in tau biology linking Alzheimer's and PSP/CBD.
• Parkinson's Foundation: National Parkinson advocacy and patient-support organization that co-publishes the Atypical Parkinsonism Podcast Series and the 'Caring for Your Patients with Atypical Parkinsonism' continuing-education course with CurePSP. Comparable in mission (care, education, research funding) and audience (Parkinson's and atypical parkinsonism patients and clinicians).
• ALS Association: Major U.S. voluntary health organization focused on amyotrophic lateral sclerosis with the same three-pillar operating model (care, awareness, research funding) as CurePSP. Comparable scale, federal advocacy footprint, and Care Center network structure make it a structurally similar peer.
• Association for Frontotemporal Degeneration (AFTD): U.S. nonprofit focused on frontotemporal degeneration, an adjacent rare neurodegenerative disease with a similar patient-support, education, and research-funding operating model. Comparable in scale, structure, and disease-rare-advocacy positioning.
• Lewy Body Dementia Association: U.S. voluntary health organization for Lewy body dementia, another synucleinopathy adjacent to MSA with overlapping patient populations and a similar support, education, and research-advocacy mission.
• The Michael J. Fox Foundation for Parkinson's Research: The largest nonprofit funder of Parkinson's research, with a federal advocacy agenda that overlaps CurePSP's on the National Parkinson's Project Advisory Council. MJFF and CurePSP co-publish advocacy calls (e.g., the June 2026 advisory council coalition statement), making MJFF a direct peer in research funding, federal lobbying, and patient education.
• Rainwater Charitable Foundation: Private foundation focused on tauopathy and neurodegenerative disease research that co-organizes the Tau Global Conference and funds the Rainwater Prize at the Mayo Clinic Brain Bank. Direct peer on CurePSP's most differentiated research asset.
• Parkinson Canada: Canadian national Parkinson advocacy organization that co-funds CurePSP's CARES grants for Canadian projects. Direct peer in cross-border atypical parkinsonism care and research funding.
• PSPA (Progressive Supranuclear Palsy Association): The UK-based PSP and CBD patient organization and co-organizer of Neuro2026 with CurePSP. Operates the same disease-specific care, research funding, and awareness model outside North America.
• American Parkinson Disease Association: National Parkinson's disease nonprofit providing patient services, professional education, and research grants, overlapping CurePSP on the federal Parkinson's advocacy coalition. Operates a comparable support-group and information-resource model.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks7 records

Key highlights7 records

Customer concentration

• YouTubeyoutube.com/channel/UC67de6xk8NFR63Zc_9ikk4A
• Xx.com/curepsp
• Facebookfacebook.com/curepsp.foundation
• LinkedInlinkedin.com/company/curepsp

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Funding overview

Funding rounds

Investors

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M&A

Investments1 record

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Frequently asked questions about CurePSP