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ELLYS TEAM INC
CUTCHOGUE, NY · EIN 991992666 · Form 990EZ · FY2025 · NTEE H12 · Medical Research · Micro (<$100K) · ellysteam.org
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mission · from form 990

Ellys Team is a foundation established with a singular goal of translating medical research to treatment in record time.

profile · synthesized from sources

Ellys Team Inc is a foundation founded by parents of a child diagnosed with NEDAMSS, a rare neurodevelopmental disorder caused by mutations in the IRF2BPL gene. The organization accelerates the development of treatments by funding and coordinating medical research, including gene therapy, antisense oligonucleotides, and drug repurposing. It operates with a focus on rapidly translating scientific discoveries into clinical applications for affected children.

named programs · 3 · from sources

What they call their work

IRF2BPL Gene Replacement Therapy Program
Developed and delivered the first human dose of gene replacement therapy for NEDAMSS, tested in animal models and patient-derived cells prior to FDA-approved human administration
Patient Registry and Clinical Trial Coordination
Manages a REDCap-based patient registry to coordinate future clinical trials and communications for NEDAMSS patients
Treatment Acceleration Initiative
Funds parallel development of multiple treatment modalities including gene therapy, antisense oligonucleotides (ASOs), gene editing, and drug repurposing to shorten time to viable treatments
activities · 2 groups

What they do

  • Rare Genetic Disease Research and Advocacy 5 activities
    • Administering IRF2BPL gene replacement therapy to NEDAMSS patients
      Administered the first-ever IRF2BPL gene replacement therapy to a child with NEDAMSS at Weill Cornell Medicine in New York City, with plans for additional doses through a phase 1/2 clinical trial following FDA authorization.
    • Building expert capacity for NEDAMSS treatment development
      Assembled a multidisciplinary team of experts in gene therapy, drug discovery, therapy, and medical care within months of founding to accelerate treatment development for NEDAMSS.
    • Conducting preclinical research for IRF2BPL gene replacement therapy
      Conducts preclinical safety and efficacy testing of IRF2BPL gene replacement therapy in animal models (mice, pigs, tadpoles) and patient-derived cells to support therapeutic development for NEDAMSS.
    • Providing clinical information about NEDAMSS
      Provides information about the clinical progression and symptoms of NEDAMSS, a neurodegenerative disorder caused by mutations in the IRF2BPL gene, to support patient care and awareness.
    • Sharing treatment pathway and clinical trial information through public webinars
      Hosted a public webinar in June 2025 to disseminate information about the IRF2BPL gene therapy treatment pathway and upcoming phase 1/2 clinical trial for NEDAMSS patients.
  • Genetic and Neurological Disease Research Funding 2 activities
    • Funding concurrent development of multiple treatment modalities for NEDAMSS
      Finances the development of multiple treatment approaches for NEDAMSS, including drug repurposing, gene replacement, antisense oligonucleotides (ASOs), and gene editing.
    • Funding research to understand NEDAMSS disease mechanisms and physiological effects
      Funds research aimed at understanding the disease mechanism and physiological effects of NEDAMSS, a neurodegenerative disorder caused by mutations in the IRF2BPL gene.
financials · form 990EZ · fy2025
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1 years on record · 2025–2025
leadership · form 990 part vii · fy2025

Who runs it

board members · 4
  • BRITTANY TRIMBATH — Director
  • JOE KATAKOWSKI — Director
  • KATHRIN MEYER — Director
  • SUSAN D'COSTA — Director
relationships · 22

Who they work with

  • Alcyone Therapeutics Partner — Research and development partner in the gene therapy initiative.
  • Alvarez & Marsal Funder — Provided funding and strategic support for the gene therapy development project.
  • Andelyn Biosciences Partner — Gene therapy manufacturer supporting production of treatment doses.
  • Andelyn Fore One Purpose Funder — Supported funding for the gene therapy development effort.
  • Canopy Biosciences Partner — Provider of regulatory and writing support for clinical trial applications.
  • Charles River Laboratories Partner — Gene therapy manufacturing and testing partner.
  • Child Neurology Foundation Partner — Collaborates with or references resources from the Child Neurology Foundation to provide information about NEDAMSS.
  • Elly’s Team Network — Foundation established to coordinate experts and accelerate treatment development.
  • Environment Mechanical Funder — Corporate donor providing financial support for the treatment program.
  • Ernst & Young Funder — Provided financial and professional support for the gene therapy initiative.
  • Genezen Partner — Gene therapy manufacturer involved in producing therapeutic doses.
  • IRF2BPL Government — Gene associated with NEDAMSS, the focus of Elly's Team's research and advocacy efforts.
  • Jackson Labs Partner — Partner in preclinical testing of the gene therapy.
  • La Jolla Labs Partner — Scientific partner involved in the research effort.
  • Lake Shore III Corporation / Hiawatha National Bank Funder — Financial supporter of Elly’s Team’s gene therapy initiative.
  • N=1 Collaborative Partner — Organization providing regulatory and writing support for individualized therapies.
  • National Library of Medicine Partner — References information from the National Library of Medicine to support educational content about NEDAMSS.
  • New York Presbyterian Hospital Partner — Clinical care partner involved in delivering gene therapy treatment.
  • RTW Foundation Funder — Financial supporter of the IRF2BPL gene therapy development.
  • Reiter Family Foundation Funder — Funder of the gene therapy research and treatment program.
  • Unravel Biosciences Partner — Scientific partner supporting the gene therapy development.
  • Weill Cornell Medicine Partner — Administered the first IRF2BPL gene replacement therapy to a patient.
strategies · 3

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.

  • Gene-Replacement Therapy as Targeted Intervention
    methodology: gene_replacement_therapy
    By pursuing gene replacement therapy, we produce treatments that address the root genetic cause of NEDAMSS, because replacing defective genes corrects the underlying molecular dysfunction rather than only managing symptoms.
  • Parallel Development Across Therapeutic Stages
    methodology: parallel_development
    By advancing multiple stages of treatment development simultaneously, we produce a shortened timeline to therapy, because running research, preclinical, and clinical phases in parallel reduces sequential bottlenecks in the therapeutic pipeline.
  • Rapid Translation of Research
    methodology: rapid_translation_of_research
    By accelerating the translation of medical research into clinical applications, we produce faster development of treatments, because bridging the gap between discovery and therapy reduces delays in patient access to effective interventions.