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HUNTERS CMT4B3 RESEARCH FOUNDATION INC
NEW YORK, NY · EIN 853259676 · Form 990 · FY2025 · NTEE H12 · Medical Research · Small ($100K-$1M) · cmt4b3research.org
revenue
$609K
expenses
$260K
net assets
$1.5M
employees
0
program ratio
85%
mission · from form 990

TO FUND SCIENTIFIC RESEARCH LEADING TO THE DISCOVERY AND DEVELOPMENT OF CURES FOR CMT4B3.

profile · synthesized from sources

HUNTERS CMT4B3 RESEARCH FOUNDATION INC is a nonprofit dedicated to funding scientific research for Charcot-Marie-Tooth Disease Type 4B3 (CMT4B3), an ultra-rare genetic disorder with no cure or treatment. The organization supports gene therapy development, drug discovery, and natural history studies, while maintaining a patient registry and educational resources. Founded by parents of a child diagnosed with CMT4B3, the foundation operates globally through a network of researchers and clinical collaborators.

irs program accomplishments · form 990 part iii · fy2021

What they reported doing

  1. #1 primary $0
    THE BOARD MEMBERS, IRIS SCHULTZ AND ROBIN SCHULTZ ATTEND THE YEARLY MEETING OF THE PERIPHERAL NERVE SOCIETY. ALL EXPENSES RELATED TO ATTENDING THE CONFERENCE ARE PERSONALLY COVERED BY THE BOARD MEMBERS. CMT4B3 IS LISTED AS A PATIENT RESOURCE OF THE PNS. ATTENDANCE AT THE PNS GIVES BOARD MEMBERS THE ABILITY TO MEET WITH AND EXCHANGE IDEASWITH INTERNATIONAL RESEARCHERS OF CMT AND CMT4B3.
  2. #2 $0
    CMT4B3 MAINTAINS A WEBSITE FOR PATIENTS, THEIR FAMILIES AND MEDICAL PRACTITIONERS TO ASSIST IN UNDERSTANDING AND TREATING CHARCOT-MARIE-TOOTH DISEASE TYPE 4B3. THE WEBSITE CONTAINS LINKS TO OUR RESEARCH PROJECTS, A NEW PATIENT PORTAL, TO JOIN OUR NEUROGENETICS REGISTRY AND THE ABILITY TO JOIN OUR NATURAL HISTORY STUDIES.CMT4B3 PRODUCES EDUCATIONAL MATERIALS DISSEMINATED AT CONFERENCES AND AT PUBLIC EVENTS TO RAISE AWARENESS. CMT4B3 MAINTAINS CLIENT MANAGEMENT SOFTWARE. ADOBE SUITE, ZOOM AND CANVA. IT RETAINS ACCOUNTING SERVICES. CMT4B3 FOUNDATION IS COMPOSED OF VOLUNTEERS WHO WORK FROM HOME AND DO NOT TAKE ANY SALARIES.
named programs · 5 · from sources

What they call their work

CMT4B3 Research Network
Global collaborative network funding research projects focused on gene therapy, drug repurposing, and disease modeling for CMT4B3
Gene Therapy Development
Supports multiple gene therapy approaches including split-vector AAV (Dr. Scott Harper) and minigene design (Dr. Stephan Zuchner) to overcome gene size limitations
Natural History Study of CMT4B3 Patients
Longitudinal study led by Professor Henry Houlden to document clinical features and disease progression using MRI and patient data
Neurogenetics Registry and Patient Portal
Online platform for patients and families to join the CMT4B3 registry, access resources, and participate in research studies
iPSC and Animal Model Development
Funds creation of human iPSC models (Dr. Mario Saporta, Dr. Jason Chua) and zebrafish/mouse models (Dr. Jim Dowling, Dr. Robert Burgess) for drug screening and mechanistic studies
activities · 6 groups

What they do

  • Rare Genetic Disease Research and Advocacy 5 activities
    • Conducting preclinical research on CMT4B3
      Advances therapeutic development for CMT4B3 through preclinical research, including the creation and use of cellular, zebrafish, rat, and mouse models to study disease mechanisms and test gene therapies and FDA-approved drugs.
    • Developing gene therapies for inherited neuropathies
      Conducts research to develop gene therapies for pediatric neurological disorders including CMT4B3 and related subtypes, using AAV vector engineering, minigene design, and transgenic animal models to advance treatments toward clinical application.
    • Engaging with the scientific community
      Attends the annual Peripheral Nerve Society meeting to collaborate with international researchers on Charcot-Marie-Tooth disease and CMT4B3, with board members covering all expenses personally.
    • Establishing patient data and biomaterial resources
      Builds and maintains a CMT4B3 BioRepository for global distribution of high-quality biomaterials and partners with RARE-X and Citizen Health to collect structured, research-ready patient data through a digital patient registry to accelerate research and drug development.
    • Operating a patient and researcher resource platform
      Operates a website that provides access to research projects, a patient portal, neurogenetics registry, natural history studies, and educational materials for patients, families, and medical practitioners on CMT4B3.
  • Genetic and Neurological Disease Research Funding 2 activities
    • Evaluating and awarding research grants
      Uses a Scientific Advisory Board to assess research proposals based on scientific merit, investigator expertise, research environment, and potential for translatability to CMT4B3 treatments, ensuring rigorous selection of funded projects.
    • Funding CMT4B3 research in laboratories
      Funds laboratories and principal investigators worldwide to conduct scientific research focused on discovering treatments and understanding the genetic and molecular basis of CMT4B3. Grants support projects on gene therapy, drug discovery, disease modeling, and natural history studies.
  • Fundraising for Community and Charitable Initiatives 1 activity
    • Facilitating fundraising and donor engagement
      Accepts cryptocurrency donations through a partnership with The Giving Block, supports Junior Board-led fundraising initiatives, and designs merchandise such as t-shirts to raise funds and awareness for CMT4B3 research.
  • Biomedical Research and Innovation 1 activity
    • Providing research tools and biomaterials to scientists
      Creates and distributes induced pluripotent stem cells (iPSCs) and CRISPR-corrected iPSC lines to researchers globally through a partnership with Sampled, enabling modeling of motor neurons and sensory cells for therapy development.
  • Disease-Specific Clinical & Patient Education 1 activity
    • Raising awareness and educating the public
      Produces and distributes educational materials at conferences and public events, shares a personal blog documenting a rare disease journey, and provides content explaining CMT4B3 to increase awareness and understanding of the disease.
  • Neurological Disorder Research & Rehabilitation 1 activity
    • Supporting clinical and translational research on hereditary neuropathies
      Conducts clinical research on Charcot-Marie-Tooth disease, including phenotype-genotype correlations, natural history studies, and development of outcome measures, while participating in clinical trials and collaborative research initiatives.
financials · form 990 · fy2025
revenue
Total revenue$609K
Contributions & grants$559K92%
Program service revenue$00%
Investment income$50K8%
Other revenue$0
expenses
Total expenses$260K
Program expenses85%
Admin / overhead9%
Fundraising6%
Salaries & benefits$0
Grants paid out$208K
Largest expense lineProfessional Fees
balance sheet
Total assets$1.48M
Cash$74K
Investments$1.40M
Liabilities$12K
Net assets$1.46M
Liquid reserves68.2 mo
5 years on record · 2021–2025 · YoY revenue +21.5%
leadership · form 990 part vii · fy2025

Who runs it

board members · 5
  • AMY CAYNE SCHWARTZ — DIRECTOR
  • HARRY FEINBERG — DIRECTOR
  • LIANNE CHAN CAPPO — DIRECTOR
  • LINDSAY ZAKEN — SECRETARY
  • MANDEEP KAUR CHOHAN — DIRECTOR
relationships · 23

Who they work with

  • CMTA Partner — Collaborates with the CMTA to study PMP22 regulation and develop drug screening assays for CMT1A.
  • Children's Hospital of Philadelphia Partner — Collaborates with Dr. Sabrina Yum at Children's Hospital of Philadelphia on tracking CMT4B3 progression and developing assessment scales.
  • Citizen Health Partner — Collaborates to operate a digital patient registry for CMT4B3 research.
  • Columbia Presbyterian Hospital Partner — Collaborates with Dr. Wendy Chung at Columbia Presbyterian Hospital to identify and track biomarkers for CMT4B3.
  • Connecticut Children’s Hospital Partner — Collaborates with Dr. Gyula Acsadi at Connecticut Children’s Hospital on gait evaluation in children with CMT.
  • Harry Feinberg Family Foundation Funder — Supports research for CMT4B3 through philanthropy.
  • Hospital for Special Surgery Partner — Collaborates with Dr. David M. Scher at Hospital for Special Surgery on musculoskeletal aspects of CMT4B3.
  • Hunter Schultz Partner — Featured with Junior Board members in connection with fundraising merchandise; appears to be a named individual involved in foundation activities.
  • Hunters CMT4B3 Research Foundation Network — Organization founded to support research and advocacy for children with CMT4B3.
  • Jackson Laboratory Partner — Funds Dr. Robert Burgess at Jackson Laboratory for CMT4B3 mouse model and gene therapy research.
  • Johns Hopkins University Partner — Collaborates with researchers at Johns Hopkins University on CMT4B3 research projects.
  • Nationwide Children's Hospital Partner — Funds Dr. Scott Harper at Nationwide Children's Hospital for split-vector gene therapy development.
  • Peripheral Nerve Society Partner — Collaborates with the Peripheral Nerve Society by attending its annual meeting and being listed as a patient resource.
  • RARE-X Partner — Collaborates with RARE-X to build a structured, research-ready data collection program for CMT4B3 patients using RARE-X's technology and data infrastructure.
  • Sampled Partner — Partner organization collaborating with Hunter’s CMT4B3 Research Foundation to generate and provide iPSCs and genetically corrected iPSC lines for CMT4B3 research.
  • Sampled Partner — Partnered to generate iPSC and CRISPR-corrected iPSC lines for CMT4B3 research.
  • Scientific Advisory Board Network — Board responsible for evaluating research proposals based on scientific merit and translatability to CMT4B3 treatments.
  • SickKids Hospital Partner — Funds Dr. Jim Dowling at SickKids Hospital for CMT4B3 zebrafish model development.
  • The Giving Block Partner — Partner organization enabling the acceptance of cryptocurrency donations.
  • UCL Institute of Neurology Partner — Funds Professor Henry Houlden at UCL Institute of Neurology for natural history study of CMT4B3 patients.
  • University of Alabama, Institute of Precision Medicine Partner — Collaborates with Dr. Matt Might at University of Alabama on drug repurposing for CMT4B3 using computational methods.
  • University of Miami Partner — Funds research by Dr. Mario Saporta and Dr. Stephan Zuchner at University of Miami on CMT4B3 therapies.
  • laboratories conducting CMT4B3 research Partner — Collaborates with research labs to advance discovery of treatments for CMT4B3.
strategies · 4

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.

  • Accelerated Research Funding with Rapid Vetting
    methodology: rapid-vetting-for-therapeutic-acceleration
    By rapidly vetting research proposals without compromising scientific rigor, the foundation accelerates the development of treatments for CMT4B3, because speed in funding decisions reduces delays in therapeutic discovery and translation.
  • Multi-Pronged Research Advancement Strategy
    methodology: integrated-research-advancement
    By combining gene therapy development, drug repurposing, patient registries, and public awareness, the foundation accelerates treatment development for CMT4B3 because an integrated approach addresses multiple barriers to therapy simultaneously.
  • Patient-Centered Data Governance and Engagement
    methodology: patient_owned_data_governance
    By engaging patients in data collection and implementing a patient-owned data governance model, the foundation increases data quality and research participation because individuals are more willing to contribute when they retain control over their health information.
  • Research-Enabling Resource Provision
    methodology: research_enabling_resource_provision
    By providing validated, quality-controlled biomaterials and centralized resources to scientists and clinicians, the foundation removes key barriers to CMT4B3 research because access to standardized tools accelerates experimental reproducibility and collaboration.