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
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Board members

  • Nicole D'Ambrosio

    Foundation President, IPEX parent

  • Samantha Wallace

    Vice President, IPEX parent

  • Brandon Sims

    Secretary, IPEX parent

  • Becca Godard

    Treasurer, IPEX parent

  • Taylor Lookofsky

    Board member, IPEX patient

  • Alicia Kalojiannis

    Board member, IPEX-like parent

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 

Patients & Families

Support for new patients & their families

Start your journey

Healthcare Providers

Resources for healthcare professionals

Here to help