About us

The IPEX Foundation's mission is to improve the treatment, quality of life, and long-term outlook for children and adults living with IPEX syndrome through research, support, education, and advocacy to families and patients.

  • We are a 501(3)(c) non-profit run by patients & families with IPEX. This is where your donations go:

  • Direct financial support to patients

    Cost of treatments, travel to clinical trials

  • Research grants

    Increase the speed and quantity of trials targeting IPEX and related syndromes

  • Increase global IPEX awareness

    Reduce misdiagnoses and get patients the care they need
Contact us

Board members

  • Julian Laval

    Executive Director, IPEX patient

  • Nicole D'Ambrosio

    President, IPEX parent

  • Samantha Wallace

    Vice President, IPEX parent

  • Becca Godard

    Treasurer, IPEX parent

  • Brandon Sims

    Secretary, IPEX parent

  • Alicia Kalojiannis

    Board Member, IPEX-like parent

  • Taylor Lookofsky ✝

    Board Member Emeritus, IPEX patient

Medical Advisory Board

  • Dr. Rosa Bacchetta, M.D.

    Professor (Research) of Pediatrics (Stem Cell Transplantation), Stanford Children's Hospital

    Profile 

  • Troy Torgerson, M.D.

    Director, Experimental Immunology, Allen Institute for Immunology, Seattle Children's Research Institute

    Profile 

  • Jodie Ouahed, M.D.

    Pediatric Gastroenterologist, Inflammatory Bowel Disease Center, Boston Children's Hospital

    Profile 

Patient or family? We're here to help

Patient resources

Medical professional caring for IPEX?

Resources for HCPs

Ready to help cure IPEX?

How to help