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Review for Deater Foundation Inc, White Deer, PA, USA

Rating: 5 stars  

Deater Foundation, Inc. was birthed twenty years ago out of a vision by two siblings from a very large extended family that was afflicted with a debiliting, inherited disease now known as HSAN1...who wanted to be able to financially support the on-going medical research of the disease in hopes of expediting a treatment or a cure in the future. This very large family was very committed to the goals and mission of Deater Foundation, Inc. Not only did this very large family volunteer to donate blood for DNA samples, they also gave of their finances--sacrificially--in order to enable DFI to meet its goals. This large family has been blessed, over the years, with renowned doctors and researchers, who have worked tirelessly in order find answers to their questions. A major breakthrough occurred in 2000 when the research team discovered the location of the defective gene that causes HSAN1 on Chromosome 9. Since that time, the research has been able to focus on a treatment and/or a cure for HSAN1. I remain committed to DFI because I am hopeful that a treatment and/or a cure for HSAN1 is on the horizon.

I've personally experienced the results of this organization in...

the year 2000 when the defective gene was located on Chromosome 9. It was the first major victory after a decade of research. And more recently (2009), a short-term clinical study using serine supplementation as treatment proved to be beneficial.

If I had to make changes to this organization, I would...

like to find/discover new donors who understand and support DFI.

What I've enjoyed the most about my experience with this nonprofit is...

Working with family.

The kinds of staff and volunteers that I met were...

Compassionate and understanding of the problems experienced by HSAN1 victims.

If this organization had 10 million bucks, it could...

Hire a grant writer and/or hire more researchers/doctors to expedite the research for a treatment/cure for HSAN1.

Ways to make it better...

There were more volunteers.

In my opinion, the biggest challenges facing this organization are...

Raising the funds.

One thing I'd also say is that...

We are so blessed with caring doctors and a research team who personally cares for our family. As a family, we are blessed to be "large"--with many HSAN1 volunteers for the research studies when needed.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


Role:  Board Member & Served as President and Secretary of Deater Foundation, Inc. since its inception in 1990.