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June 22, 2010

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Review from Guidestar
June 22, 2010

I am distantly related to members of this family who has been individually and personally affected by a horrible disease. Reynold and Henry Deater were the first people afflicted and I remember them as a child slowly losing first toes and fingers and then half their legs. No one in the medical field could diagnose the disease, even after they volunteered themselves to be "guinea pigs" in a hospital in Philadelphia, undergoing horrific treatments including radiation to find a cure.

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The Great!

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

I have seen them finding a physician on their own who was willing to take on the disease as a challenge and grow the Foundation to fund his research. This is no government grant seeking whining organization. I admire their stoicism.

More feedback...

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

End the pain and debilitating degeneration of their bodies.

When was your last experience with this nonprofit?

2009

June 16, 2010

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Review from Guidestar
June 16, 2010

This is an amazing family, one of which I am very blessed to be a part of. When I found out at 16 that I had this disease, it could have affected me in one of two ways-give up and give in, or adapt and move on. I chose the ladder. Having the deater disease for over thirty years there have been good days and bad, but the good always out weigh the bad. I wear braces that allow me to stay very active. I have lost all of my fingertips except for my thumbs from infection. And just three weeks ago I had a total knee replacement, which was a huge success, thank God, and I am walking better than I had in 10 months. All that to say, we are very close to finding a cure that would prevent our future generations from getting this. What I have gone through and what so many in my family have endured can be stopped. Won't you please help us with this final stage to blot out this disease. If you can't support us financially, your prayers are always welcome. thanks!

The Great!

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

We recently did a study of a possible cure for the disease and although I, being on a very low dose, didn't feel any different, my brother and many others noticed a distinct difference. We are very close and this is such an exciting time for our family.

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When was your last experience with this nonprofit?

2009

June 6, 2010

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June 6, 2010

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.

The Great!

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.

Ways to make it better...

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

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

More feedback...

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?

2010

June 6, 2010

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June 6, 2010

I am proud to help out with DFI because I have seen the medical research successfully meet with milestones over the past 20 years. I am excited to hear about a new study with affected family members that once again delivers hope for family member treatment and those with HSAN1 (both present and future).

The Great!

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

I've personally experienced the results of this organization by witnessing family member's hardships over the years who long for a successful treatment for HSAN1.

Ways to make it better...

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

If I had to make changes to this organization, I would recommend it to be deleted from the "health" related non-profit list AFTER a cure has been found. :)

More feedback...

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

the opportunity to look back and see all the great medical moments that have occurred in this race to find a cure.

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

diligently working toward an end goal.

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

hire doctors and medical research staff to learn more about this disease.

Ways to make it better...

HSAN1 would not affect so many people in the family.

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

developing the funds to keep up with ongoing studies.

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

I need to redo the website, but this is a family just undertaking this task day by day.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

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