While this is not a role I ever anticipated holding, I do so with my full heart. To have my own granddaughter diagnosed at the age of 5 was devastating. Trying to find another family with the same disorder took well over a year. It was a lonely journey and one that I wanted to change for other families newly diagnosed. No one should feel so alone.
With a background in small business, many years as a paralegal and support from a great group of families and our rare disease community, I have started the Arginase 1 Deficiency Foundation, a safe site offering hope and a gentle place to discover what having an ultra-rare disorder is all about.