Greetings! I am Jackson Fukuda and I’m on the Board of Directors of the Arginase 1 Deficiency Foundation in addition to being a patient with ARG1-D.
I was diagnosed in 1995 and at the time the information was scarce and there were very few patient groups focused on UCDs. It was a scary and rough time for my family and I. We were grateful to the few who listened to our story and could relate and empathize with it. After many years, our involvement with UCD patient groups started to diminish as there weren’t many patients with ARG1-D. But years later, as more families with ARG1-D started to emerge, we connected with them and eventually we made a small group which, in time,evolved into the Arginase 1 Deficiency Foundation. It’s great to be able to help those in need, especially during the most critical times.
My goal is to advocate for the families, patients and caregivers who deal with ARG1-D, day in and day out, in hopes and confidence that one day, the diagnosis of ARG1-D will not be such devastating news as it was for me and others.