Board of Directors
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.
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.
My name is Tanja Brandt, and I am the Director of Family Support for the Arginase 1 Deficiency Foundation. My daughter was diagnosed with Arginase 1 Deficiency right before her 5th birthday in 2016.
It has been a bumpy road that started off with overwhelming worry due to the lack of knowledge and community. Overtime, we connected with other families in the ARG1-D world, and it felt like a weight had been lifted off my shoulders. These families had unique but still very similar stories, which was something I had never experienced before.
I was given hope, support, and unconditional love through these people and that is what we are hoping to provide to new families and individuals diagnosed with Arginase 1 Deficiency.