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.

Grandma Chris

Douglas Zahn is the CFO and a Founder of Insight Photonic Solutions, Inc. and Insight LiDAR, Inc. Douglas has a diverse, extensive, and successful background in small business finance, startup finance, and both small and large commercial business finance. Since 1981, Douglas has been involved with and responsible for a wide variety of financial responsibilities, including raising over $50M in investment funding, financials, year-end audits, annual budgeting, multi-year forecasting, and strategic planning on both the corporate and departmental levels. He is on the board of several private companies.Douglas holds an BA (with an emphasis in accounting) and an MBA (with an emphasis in finance) from the University of Washington.

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.

Warm Regards,
Jackson

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.

Tanja

Tricia Sterling has over 20 years of experience in the pharmaceutical and biotechnology space with 14 years working directly with patients and caregivers living with rare diseases.

Her career has focused on both Patient Advocacy as well as the development of Patient Support Programs for rare disease products pre-and post-commercialization.   She was responsible for designing the Patient Services Program, including access and distribution for Pegzilarginase as well as was instrumental in developing, supporting and mobilizing the ARG1- D patient community.

She brings a unique perspective as she has worked for several rare disease pharmaceutical companies and appreciates the role patients play in the drug development process and beyond.

English:
My name is Vanessa Hinojoza, and I am a member of the Arginase 1 Deficiency Foundation. In 2017, my daughter was diagnosed with Arginase Deficiency at 2.5 years old. It was a devastating time for my family and I, especially because we had never heard of Arginase Deficiency before. With limited information available online, I searched for a community for guidance and support. I was able to connect with other UCD groups which then led me to find our Arginase 1 Deficiency family.

I look forward to helping new families join our community, and receive the same support as I did. I am also bilingual and look forward to connecting with Spanish speaking families as well.

Spanish:
Mi nombre es Vanessa Hinojoza y soy miembra de la Arginase 1 Deficiency Foundation. En 2017, mi hija la diagnosticaron con Arginase Deficiency a los dos años y medio de edad. Fue un momento devastador para mi y mi familia, especialmente porque nunca antes habíamos oído hablar de la deficiencia de Arginase. Con información limitada disponible sobre línea, busqué una comunidad que me guiara y apoyara. Me pude conectarme con otros grupos de UCD que luego me llevaron a encuentra a nuestra familia de Deficiencia de Arginase 1.

Espero poder ayudar a nuevas familias a conectarse y recibir el mismo apoyo como yo recibí. Soy bilingue y gustaría conectarme con familias que hablan español.

I am the father of daughter who was diagnosed with Arginase 1 Deficiency in 2011 at the age of 8 at our home in the UK.  The symptoms that lead to that diagnosis (metabolic instability) was extremely distressing for our daughter and very upsetting for us as parents. Fortunately the ARG1D diagnosis promptly

ARG1D is a life-long condition and every ARG1D journey is different to the other. Our daughter’s journey from diagnosis to early adulthood today (in 2024), has been a challenging and difficult one for our daughter, and was an emotional and lonely one for us as parents and carers. We did not know of anyone else who had ARG1D, to reach out to for support. Gradually over time, we as parents and carers had to learn to become the experts in managing ARG1D, as a rare disease.

The Arginase 1 Deficiency Foundation has connected and established a small global community of families affected by ARG1D.

Arginase 1 Deficiency Foundation is a space where ARG1D families can connect, reach-out for help, support, and reassurance; learning from each other’s experiences; especially for families who are at the start or their ARG1 journey.

Collectively the ARG1 community can push to raise awareness and support for ARG1D patients; ultimately in the hope for effective long-term treatment and cure for the ARG1D condition.

My name is Alexandra Eaton, I am the mother of three children, grandmother of two, and also a proud board member of The Arginase 1 Deficiency Foundation.  My son Josh was diagnosed with Arginase 1 Deficiency at the age of 3.  He is now 26.  The late diagnosis of this rare disease has forever changed our lives.  There was insufficient information available and our family felt isolated, alone, and frightened.

ARG1-D has led us on a complicated journey.  It’s been overwhelming and challenging managing my son’s medical complexities.  I’ve learned to navigate through so many different and unique situations resulting in my continued thirst for knowledge.  This has given me the desire to contribute and share my experiences with all.

In time I was introduced to the UCD Community which connected me to other ARG1-D families.  We realized there were many similarities unique to ARG1-D which led to the creation of the Arginase 1 Deficiency Foundation.  As a parent, caregiver, and committed advocate for Arginase 1 Deficiency, I am looking forward to sharing my knowledge, and support to all the newly and past diagnosed patients, medical community, and fellow board members.

Never give up hope!

Sincerely,
Alexandra Eaton