My Nonprofit Reviews

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Review for The Corneal Dystrophy Foundation, San Jose, CA, USA

Rating: 5 stars  

In the 1980's I heard one opthamologist tell aother that I had Fuchs Dystrophy. I was not told directly and thought nothing of it. Fast forward, I needed a cataract operation and asked my Doctor how many patients he had operated on with this problem. He told me thousands. It just sounded too glib to me. I subsequently looked up Fuchs on the internet... became educated and looked for another Doctor since cataract surgery needs special handling so that the cornea problem is not aggravated. Fuchs Friends brought me to Signe Maximus in Atlanta and subsequently to the physician I now see who understands and knows what he is doing. Because of this, up to now I have been spared having my cornea replaced and when the time comes to do it I am fully confident in my medical care. This would never have happened without having the Corneal Dystrophy website up and running and Fuchs Friends there for education and support.

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

Primarily in keeping up to date with the latest medical break-throughs and through our "talk list" being kept aware of what the progression of this disease is so that I can alert my Doctor to what is happening to me.

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

I have a friend in NYC whose Dr. told him he was going blind from Fuchs Dystrophy. My knowledge helped him. Doctors and the general public must be better educated. Corneal Dystrophy Found. can do this but it needs the financial means to do so.

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

The willingness of pphysicians to come to our seminars and to directly share their work with us.

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

Dedicated and awesome...considerint that they are all volunteers

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

Educate physicians in diagnosing and educating their patients. Teaching more physicians techniques in operating. Bringing it to attention of the general public.

Ways to make it better...

My oriiginal Doctor had cued me into the problem so that I could keep track of it better.

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

Lack of funds to spread awareness and what can be done to resolve the problem at the proper time.

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

Kudos to the people who keeping pushing to make the Foundation better

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?


Role:  Client Served & Ihave worked on a yearly seminar they do and most recently on a localmeeting we had.