irs program accomplishments · form 990 part iii · fy2021
What they reported doing
- #1 primary $14KTHE MOVEMENT IS MEDICINE(MIM) PROGRAM PLAYS AN ESSENTIAL ROLE BY PROVIDING RESOURCES TO IMPROVE PHYSICAL AND MENTAL WELLBEING FOR PEOPLE LIVING WITH CMT. MIM FITNESS AMBASSADORS PROVIDE HNF MEMBERS FREE WEEKLY LIVE CLASSES TO HELP INCREASE PATIENTS' STRENGTH, BALANCE, AND OVERALL FITNESS LEVELS.
- #2 $181KHNF CONDUCTS CMT-CONNECT WEBINARS FOR PATIENTS, THEIR FAMILIES AND OTHER STAKEHOLDERS TO EMPOWER, EDUCATE AND CONNECT. HNF PUBLISHES CMT UPDATE QUARTERLY NEWSLETTERS AND DISSEMINATES ADDITIONAL EDUCATIONAL COLLATERAL (IE.THRIVE GUIDE, ABC OF AFO'S, CENTERS OF EXCELLENCE, ETC.) TO SUPPORT THE CMT COMMUNITY. HNF'S ONLINE PRESENCE (WWW.HNF-CURE.ORG) AND (WWW.INSPIRE.COM/GROUPS/CHARCOT-MARIE-TOOTH-CMT/) OFFERS RESOURCES TO HELP PATIENTS MANAGE THEIR CMT, CONNECT WITH OTHERS AND INCREASE AWARENESS.
named programs · 7 · from sources
What they call their work
CMT Biobank
Biological sample repository supporting CMT research through collection of blood, saliva, and tissue samples from patients
CMT Clinical Trial Readiness Summit
Annual event bringing together patients, researchers, and clinicians to advance clinical trial preparedness and community engagement
CMT Cure Accelerator
$10 million campaign to fund infrastructure and research initiatives aimed at advancing CMT treatments to approval
CMT-Connect Webinars
Educational webinar series covering research updates, clinical trials, wellness, and patient advocacy for the CMT community
GRIN Patient Registry
Global Registry for Inherited Neuropathies that collects genetic and clinical data to accelerate research and connect patients to trials
Movement Is Medicine (MIM)
Fitness and wellness program offering free weekly live classes, summits, and resources to improve strength, balance, and overall wellbeing for people with CMT
TRIAD Research Accelerator
Collaborative research initiative with academia, government, and industry to accelerate therapeutic development for CMT
activities · 8 groups
What they do
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Patient and Researcher Conferences 3 activities
- Expands access to CMT education and care through virtual and hybrid eventsExpanded the Movement is Medicine Summit to include a virtual component in partnership with AdventHealth’s CMT Center of Excellence, increasing accessibility. Hosted interactive two-day summits featuring expert-led sessions, one-on-one evaluations, and patient-curated workshops.
- Hosts externally-led Patient-Focused Drug Development (PFDD) meetings with the FDAOrganized and led the only FDA Patient-Focused Drug Development meeting for CMT as an independent organization, including a 2018 externally-led PFDD meeting attended by patients, caregivers, government officials, healthcare providers, industry, and payors. Hosts El-PFDD meetings to support therapy development and clinical trial preparation.
- Hosts patient summits and clinical trial readiness programsHosts annual CMT Summits and Clinical Trial Readiness Summits, offering educational sessions, surgical and bracing consultations, fitness evaluations, and research participation opportunities. The 2026 summit had over 200 attendees, with high satisfaction scores: 96% rated experience as Excellent or Very Good and 98% would recommend it.
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Rare Genetic Disease Research and Advocacy 2 activities
- Conducts patient-focused research on Charcot-Marie-Tooth diseaseConducts and supports research studies on Charcot-Marie-Tooth (CMT) disease, including mutation frequency analysis, longitudinal wearable studies in adults and children, and development of transgenic rat models for CMT4A, CMT-SORD, and CMT2A. Research is conducted at events like the CMT Summit and through remote monitoring partnerships.
- Operates the Genetic Registry in Neuropathy (GRIN) and global CMT biobankManages the Global Registry for Inherited Neuropathies (GRIN), the world's largest IRB-approved patient registry for CMT, launched in 2013 to support patient-focused research. Also operates the first open-access CMT biobank, providing biospecimens to qualified researchers globally; collected 88 biospecimens during the 2026 CMT Summit.
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Medical Professional Education & Training 2 activities
- Educates healthcare providers on Charcot-Marie-Tooth diseaseEducates medical professionals through publications in Neurology Reviews’ Annual Rare Neurological Disease Special Report, collaboration with AANEM on continuing medical education courses, and hosting a CMT symposium at their annual meeting.
- Trains clinicians and certifies professionals in CMT outcome measuresSupports the CMT-CERTIFY training program and hosts Clinical Trial Readiness Summits to train clinicians. Over 30 clinicians were certified in CMT outcome instruments (CMT-FOM & CMTPedS) at the 2025 summit.
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Healthcare Policy Advocacy 1 activity
- Advances regulatory strategy through patient experience data collection and disseminationDevelops regulatory strategies to collect and submit real-world patient experience data from patients and caregivers to inform industry and regulatory decision-making. Provides this data to the FDA and other stakeholders to improve understanding of living with CMT.
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Biomedical Research and Innovation 1 activity
- Facilitates multi-sector collaboration in CMT drug developmentOperates the TRIAD Network, connecting academia, government, and industry in CMT drug development for 17 years. Developed the Therapeutic Research in Accelerated Discovery (TRIAD) initiative and the TRIAD Research Accelerator to advance treatments through cross-sector collaboration.
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Genetic and Neurological Disease Research Funding 1 activity
- Funds CMT research through public fundraising campaignsFunds research toward treatments and a cure for Charcot-Marie-Tooth disease using money raised from community events, Facebook Birthday Fundraisers, and the $10 million CMT Cure Accelerator campaign. All donated funds are directed into the research pipeline with no spending on overhead or awareness campaigns.
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Published Narrative Projects 1 activity
- Produces media and educational content for pediatric and general audiencesPublished children's books—Arlene On the Scene and Arlene the Rebel Queen—to support pediatric patients and families affected by CMT. Produced the documentary "Bernadette" to highlight lived experiences of individuals with the disease.
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Community Wellness Movement Classes 1 activity
- Provides ongoing fitness, wellness, and educational programming for the CMT communityOffers free weekly live fitness classes through the Movement is Medicine (MIM) program and the MIM Fitness Ambassador Program, designed for individuals with CMT and other disabilities. Conducts CMT-Connect webinars (over 30 hosted), publishes quarterly newsletters, and produces educational materials such as the Thrive Guide and ABC of AFOs.
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financials · form 990 · fy2024
revenue
Total revenue$545K
Contributions & grants$582K107%
Program service revenue$00%
Investment income$6K1%
Other revenue$-43K
expenses
Total expenses$895K
Program expenses90%
Admin / overhead6%
Fundraising4%
Salaries & benefits$198K
Grants paid out$319K
Largest expense lineCompensation
balance sheet
Total assets$1.02M
Cash$651K
Investments$144K
Liabilities$6K
Net assets$1.01M
Liquid reserves10.7 mo
6 years on record · 2019–2024 · YoY revenue -16.8%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 2
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| COURTNEY HOLLETT | EXECUTIVE DIRECTOR | 40 | $75K |
| ALLISON MOORE | FOUNDER AND CHIEF EXECUTIV | 50 | $53K |
board members · 11
- BROOKE WARREN — SECRETARY
- DENNIS SULLIVAN — BOARD MEMBER
- DOMINIC HADEED — BOARD MEMBER
- GRETCHEN CAPPIELLO — BOARD MEMBER
- KARA SPRAGUE — TREASURER
- KERIN REILLY — BOARD MEMBER
- MATTHEW DOWNING — CHAIRMAN
- NATALIA SALEJKO — BOARD MEMBER
- POYA GHASRI — BOARD MEMBER
- ROBERT KAUFFMAN — BOARD MEMBER
- SITAL BHAVSAR — BOARD MEMBER
relationships · 15
Who they work with
- AdventHealth Partner — Collaborated with HNF on a virtual Movement is Medicine Summit through its CMT Center of Excellence.
- American Association of Neuromuscular & Electrodiagnostic Medicine Partner — Partnered with AANEM to develop a continuing medical education course and hosted a CMT symposium at their annual meeting to educate neurologists and medical professionals.
- BioSensics Partner — Partnered with HNF on the Adult and Pediatric Longitudinal Wearable Studies.
- CMT Biobank Partner — Collaborates on research by enrolling summit attendees into the CMT Biobank study.
- FDA Government — Aligns with FDA patient-focused drug development guidance and engages in regulatory strategy using patient experience data.
- FDA Government — Collaborated with the FDA on a Patient-Focused Drug Development meeting for CMT-SORD.
- FDA Government — Collaborates with the FDA through patient-focused drug development initiatives and regulatory engagement to inform CMT treatment development.
- FDA Government — Organized and led a Patient-Focused Drug Development meeting with the FDA.
- Facebook Partner — Platform used to host birthday fundraisers for CMT research.
- HNF Partner — Collaborates with HNF on partnered fundraising events for Charcot-Marie-Tooth.
- NMD Pharma Partner — Collaborates with HNF to integrate patient voice into clinical trial design, outcome measures, and recruitment strategies.
- NMD Pharma Partner — Supported the 2026 CMT Summit and advances CMT research and therapy development in partnership with HNF.
- Neurology Reviews Partner — Published educational materials in Neurology Reviews’ Annual Rare Neurological Disease Special Report to inform healthcare providers about CMT.
- SHOEBOX Partner — Partnered with HNF to conduct hearing screenings and explore hearing loss as a potential endpoint in CMT trials.
- Therapeutic Research in Accelerated Discovery Partner — Collaborative research initiative with academia, government, and industry to develop treatments for CMT.
strategies · 5
How they approach the work
Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.
- Collaborative Science-Patient Programming Modelmethodology: integrated_science_patient_programmingBy running parallel scientific and patient wellness programming that integrates research with lived experience, the organization advances both treatment development and patient outcomes because alignment between researchers, clinicians, and patients strengthens trial readiness and holistic care.
- Exercise-as-Medicine for Neuropathy Managementmethodology: exercise_as_medicineBy promoting tailored physical activity and nutrition programs designed for people with disabilities, the organization improves functional well-being in CMT patients because structured exercise mitigates symptom progression and enhances quality of life within neurological constraints.
- Holistic Patient Support as a Foundation for Self-Advocacymethodology: holistic_patient_supportBy addressing emotional, social, economic, and physical aspects of living with CMT, the organization supports long-term well-being and self-advocacy because comprehensive support increases patient resilience, engagement, and capacity to participate in research and care decisions.
- Patient-Centered Research and Drug Developmentmethodology: patient_focused_drug_developmentBy integrating patient and caregiver lived experience into research, clinical trial design, and regulatory processes, the organization ensures that treatments reflect patient priorities and are more likely to succeed in real-world settings, because patient input improves trial relevance, recruitment, and endpoint validity.
- Patient-Powered Data Infrastructure for Accelerated Discoverymethodology: patient_powered_data_registryBy centralizing patient-generated genetic and clinical data, the organization accelerates treatment development for Charcot-Marie-Tooth disease because aggregated real-world evidence enhances research readiness, supports clinical trial design, and attracts industry collaboration.