Tyler's Hope for a Dystonia Cure

What Tyler's Hope for a Dystonia Cure does

Tyler's Hope for a Dystonia Cure is a 501(c)(3) nonprofit foundation founded in 2006 by Rick and Michelle Staab following their son Tyler's diagnosis with DYT1 dystonia, a genetic neurological movement disorder caused by TOR1A gene mutations. Headquartered in Alachua, Florida, with a five-person team, the foundation's mission is to raise awareness, advance research, and accelerate the discovery of a cure for DYT1 dystonia. It serves three primary constituencies: DYT1 dystonia patients and their families, dystonia researchers and clinicians, and donors/supporters who fund the foundation's work. Operationally, the foundation funds research grants and fellowships, operates the Dystonia International Patient Registry (DIPR), and runs a Centers of Excellence network anchored at UF Health Norman Fixel Institute (since 2008) and Duke Health (since 2022). The foundation's research portfolio spans gene therapy, CRISPR-based approaches, drug repurposing (most notably a 2025 breakthrough identifying FDA-approved ritonavir as a candidate therapeutic), deep brain stimulation outcomes, and neuroimaging studies.

The foundation's revenue is generated entirely through donations rather than product or service sales. Income streams include individual donations, event-based fundraising (Hope Weekend, Cajun Crawfish Boil, Bourbon at the Barn, Season of Hope 5K/15K, Think Tank), planned giving and benefactor society memberships, corporate sponsorships with multi-tier structures, and research fellowship grants. Go-to-market is event-driven and community-led: the foundation engages patients, families, researchers, and clinicians through in-person events, educational webinars, advocacy programs, and social media. Distribution of the foundation's "products" — research funding, patient services, and awareness — occurs through its Centers of Excellence network, the DIPR registry, and direct community outreach. Tyler's Hope is a member of the Dystonia Coalition, an international collaboration spanning more than 50 sites across North America, Europe, Asia, and Australia, and partners with research institutions including Baylor College of Medicine, VIB-KU Leuven, and Mass General Hospital/Harvard Medical School.

Name

Tyler's Hope for a Dystonia Cure

Legal name

Tyler's Hope for a Dystonia Cure

Website

https://tylershope.org

Company type

Private

Founded year

2006

Operating status

Operating

Headcount range

1–10 employees

Short description

Tyler's Hope for a Dystonia Cure is a 501(c)(3) nonprofit foundation founded in 2006 that funds research, raises awareness, and accelerates discovery of a cure for DYT1 dystonia, operating Centers of Excellence at UF Health and Duke Health, a patient registry, and a fellowship program for dystonia patients, families, and researchers.

Ownership category

akta.pro rank

Product category

Dystonia Research & Advocacy

NAICS

Voluntary Health Organizations (813212), Grantmaking and Giving Services (81321)

SIC

Services-Health Services (8000)

akta.pro primary industry

Disease-Specific Research & Support (e.g., Cancer, Diabetes, ALS) (BPAGACAA)

akta.pro secondary industries

Rare Disease & Special Needs Support Organizations (BPAGACAM), Health & Medical Research Grantmaking Foundations (BPAGAKAL)

Keywords

• Dystonia research funding
• Nonprofit medical research
• Patient advocacy services
• Rare disease awareness
• Charitable fundraising events

Headquarters

HQ city

Alachua

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, Others

Revenue model

1. Individual Donations: Tax-deductible charitable contributions from individual donors supporting dystonia research and awareness programs.
2. Event Fundraising: Revenue from annual events including Hope Weekend (raised over $225,000 in 2022), Cajun Crawfish Boil (raised over $30,000 in 2022), Season of Hope 5K/15K, Think Tank summits, and Bourbon at the Barn.
3. Planned Giving and Benefactor Society: Estate planning, bequests, and long-term charitable giving programs for major donors committed to the foundation's mission.
4. Corporate Sponsorships: Sponsorship revenue from companies supporting events and research initiatives, with multiple sponsor tiers (Title, Gold, Silver, Bronze) for Hope Weekend and other events.
5. Research Grants: Tyler-sponsored grants funding dystonia research at partner institutions including UF Health and Duke Health, with awards to individual researchers like Dr. Stephanie Cernera and Dr. Jun Yu.

Go-to-market motion2 records

Distribution channels4 records

Marketing channels7 records

Core offering

Tyler's Hope for a Dystonia Cure is a 501(c)(3) nonprofit foundation that funds scientific research, raises awareness, and provides patient support services for DYT1 dystonia. The foundation's offerings include an international patient registry (DIPR), research grants and fellowship programs at academic medical centers, a Centers of Excellence care network (UF Health and Duke Health), educational resources, and a portfolio of annual community fundraising and awareness events.

Product overview

Tyler's Hope for a Dystonia Cure is a nonprofit foundation established in 2006, not a technology product company. The organization operates four core service offerings: (1) the Dystonia International Patient Registry (DIPR), an international patient registry connecting DYT-TOR1A patients with clinical research studies; (2) Dystonia Research & Education Programs encompassing grant funding for scientific breakthroughs, fellowship training at Centers of Excellence, and patient/family education; (3) an Annual Events Program featuring Hope Weekend, Cajun Crawfish Boil, Think Tank symposium, Season of Hope run, and Bourbon at the Barn fundraising events; and (4) a Centers of Excellence Network partnering with University of Florida's Norman Fixel Institute and Duke Health for comprehensive dystonia care and clinical trials. The organization does not offer commercial software products or technology platforms.

Differentiator

Problem solved

Functional benefit

Products and services

• Dystonia International Patient Registry (DIPR) An international online patient registry maintained by Tyler's Hope that connects individuals with a DYT-TOR1A genetic diagnosis to clinical studies, research opportunities, and future clinical trials. Serves DYT1 dystonia patients and the research community.
• Dystonia Research and Education Programs Grant funding for scientific breakthroughs in DYT1 dystonia (including gene therapy, drug repurposing, neuroimaging, and CRISPR research), fellowship training programs at Centers of Excellence, and educational content about dystonia awareness, symptoms, and treatment options. Serves dystonia researchers, clinicians, patients, and families.
• Annual Events Program Portfolio of annual fundraising and awareness events including Hope Weekend (premier annual fundraiser, 20th anniversary in 2025), Cajun Crawfish Boil, Think Tank (annual gathering of dystonia researchers and clinicians), Season of Hope 5K/15K, and Bourbon at the Barn. Serves donors, sponsors, patients, families, and the research community.
• Centers of Excellence Network Network of designated healthcare partnerships providing comprehensive dystonia care, clinical trials, and fellowship programs. Currently comprises University of Florida's Norman Fixel Institute for Neurological Diseases (since 2008) and Duke Health (since 2022). Serves dystonia patients seeking specialized multidisciplinary care and clinicians conducting clinical research.

Quantifiable outcome

• Ritonavir corrected abnormal protein features in the brain and had therapeutic effects in DYT1 dystonia mouse models
• +2 more outcomes

Named customers8 records

Segments4 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Feature4 records

Partnerships

Eight partnerships are on record, tiered flagship, core and minor.

• Duke HealthflagshipStrategic or Co-development Partner · 1 January 2022Tyler’s Hope Center of Excellence at Duke Health, designated in September 2022. Dr. Nicole Calakos and colleagues discovered that 18 FDA-approved medications have potential to correct cellular and brain abnormalities associated with dystonia, with ritonavir showing greatest potential. The institution provides clinical treatment, research infrastructure, and fellowship programs for next-generation researchers and clinicians in dystonia.
• Dystonia CoalitioncoreStrategic or Co-development Partner · 1 January 2009An international collaboration between clinical experts, researchers, and patient advocacy groups to advance dystonia research. Established with NIH support in 2009. Tyler's Hope Foundation is one of at least 17 patient advocacy groups committed to the coalition’s core activities. The coalition has over 50 member sites across North America, Europe, Asia, and Australia, with clinical data, video recordings, and DNA samples for over 3,000 patients available for research sharing.
• UF Health Norman Fixel Institute for Neurological DiseasesflagshipStrategic or Co-development Partner · 1 January 2008Tyler’s Hope’s first Center of Excellence since 2008. The partnership brings together more than 15 disciplines under one roof for comprehensive dystonia care. The institute coordinates medical specialists (neurology, neurosurgery, psychiatry, clinical health psychology, rehabilitation medicine), therapies (physical, occupational, speech, communication sciences), research partners (McKnight Brain Institute, Center for Translational Research in Neurodegenerative Disease, Neuroscience & Biomedical Engineering), and support services. Tyler's Hope funds research trials, clinicians, and lab work at the institute.
• Dystonia International Patient Registry (DIPR)coreStrategic or Co-development PartnerTyler’s Hope maintains a registry of DYT-TOR1A dystonia patients to guide clinical studies and connect patients with research opportunities. Partners with the Global Dystonia Registry to support future clinical trials.
• The InterMed GroupminorOthersTyler’s Hope headquarters is located inside The InterMed Group’s Corporate Office in Alachua, FL. InterMed is a healthcare technology management company.
• Baylor College of MedicinecoreStrategic or Co-development PartnerResearch collaboration with Meike E. van der Heijden and Roy V. Sillitoe at Baylor College of Medicine on cerebellar dysfunction in rodent models with dystonia, tremor, and ataxia.
• Mass General Hospital/Harvard Medical SchoolcoreStrategic or Co-development PartnerDr. Cristopher Bragg’s lab at MGH and Harvard Medical School studies cellular mechanisms underlying hereditary dystonias including DYT1, DYT6, and X-Linked Dystonia-Parkinsonism (XDP). Dr. Bragg serves as Director of the MGH Collaborative Center for X-Linked Dystonia-Parkinsonism (CCXDP).
• VIB-KU Leuven (Belgium)coreStrategic or Co-development PartnerDr. Rose Goodchild’s lab at VIB in Belgium conducts research on cellular lipids and their role in dystonia, exploring the connection between faulty genes and neurological disorders.

Scale indicators9 records

Recent moves6 records

Expansion highlights5 records

Broad incumbents

• National Organization for Rare Disorders (NORD): Umbrella advocacy and research organization for all rare diseases in the U.S. Overlaps with Tyler's Hope on patient advocacy and research funding but operates as an industry-level incumbent across 7,000+ rare conditions.
• Parkinson's Foundation: Major Parkinson's research and patient-services nonprofit with a Centers of Excellence network. Functionally comparable to Tyler's Hope's two-CoE model but at significantly larger scale and on a related movement disorder.
• Michael J. Fox Foundation for Parkinson's Research: The dominant nonprofit funder of Parkinson's research, including drug-repurposing and gene-therapy programs. Adjacent (Parkinson's is a related movement disorder) and a comparable operating model at much larger scale.

Regional players

• Dystonia Europe: European umbrella organization for dystonia patient associations. Comparable patient-advocacy and research-funding mission but operates across Europe rather than the U.S., and is a federation of national groups.

Direct peers

• Dystonia Medical Research Foundation (DMRF): The largest U.S. nonprofit dedicated to dystonia research, awareness, and patient support. Directly comparable mission (dystonia research funding, patient services, Centers of Excellence model) but broader scope across all dystonias, not just DYT1.
• Hereditary Disease Foundation: Long-standing rare genetic neurological disorder research nonprofit funding basic and translational science. Comparable grant-making, researcher-convening (Think Tank analog), and disease-specific mission focus.
• Friedreich's Ataxia Research Alliance (FARA): Disease-specific rare-neurological-disorder research nonprofit with a patient registry, multi-institution research grants, and Centers of Excellence-like care network. Closely analogous in operating model and scale to Tyler's Hope.
• Cure SMA: Patient-focused rare-disease nonprofit funding spinal muscular atrophy research, supporting a patient registry, and driving an approved therapy to market. Demonstrates the trajectory potential for a focused rare-disease research foundation.
• Bachmann-Strauss Dystonia & Parkinson Foundation: Nonprofit funding research into dystonia and Parkinson's disease, operating its own Centers of Excellence and research grant programs. Comparable in mission and structure to Tyler's Hope but covers a wider disease umbrella.

Emerging players

• Cure Dystonia Now: Smaller dystonia-focused nonprofit funding research and raising awareness. Overlaps with Tyler's Hope in mission and constituency but operates with a narrower institutional footprint and research pipeline.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks6 records

Key highlights6 records

Customer concentration

• LinkedInlinkedin.com/company/tyler's-hope-for-a-dystonia-cure

Revenue estimate

Valuation estimate

Number of profiles

Profiles4 records

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Tyler's Hope for a Dystonia Cure