In early 2009, the Anaphylaxis Foundation was created as an IRS 501(c)(3) tax-exempt charitable entity to:
- assess the efficacy of oral immunotherapy (OIT) for food allergies
- if OIT market ready, develop sustainable business models to strategically locate and create allergy centers to address access to therapy
- establish acceptable Standards of Care
- develop combined philanthropic/capital markets based seed financing for formation of OIT clinics
- provide web accessible, research based assessment of OIT for parents
A three month study of 2008 clinical research concluded oral immunotherapy was, at best, in early investigational stages. The assertions by certain allergy clinics claiming advancements such that the deadly proteins were being routinely ingested in at home trials were highly suspect and lacked even rudimentary controls to allow scientific assessment of efficacy such as double-blind placebo trials.
It is now five years later. A considerable amount of research grant funding has allowed significant oral immunotherapy clinical trials to be conducted. Once again, however, there is little publicly available information beyond fluff pieces by various journalists. As many parents willingly relocate cross-country in hopes of a cure for their children, it is imperative that reliable sources of information be available.
In November 2012, the National Institute of Health conducted a 30 question on-line survey regarding oral immunotherapy for food allergies. This study, which had 1,274 patient responses, is the only independent government perspective extent.
Our last study, like this, was a labour of love. As a father of a child with level 5 peanut allergy, it was something that, then as now, simply had to be done and was entirely self-funded. However, we hope to use crowdfunding for this charitable and much-needed endeavour this go round, since these new funding methodologies have matured.