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The Corneal Dystrophy Foundation
October 1, 2010

I cannot say enough wonderful things about the Corneal Dystrophy Foundation and its Fuchs Friends site. Without the support and help of this website and those who run it and the other members who participate on the site I would never have had the fantastic outcome i have had after two cornea transplants plus related surgical procedures. There is no place else that I could turn to that had the information I needed to help me know when I needed surgery, how to find the doctors I needed and how to cope with the complications that followed. The people on the site had more information for me than my cornea specialist when it came to understanding what my symptoms were and where to go to find the help I needed. They gave me the knowledge of their past experiences plus the support in the present that is priceless. I cannot say enough about how wonderful this group is. There are simply no words to express my thanks to them. Through this group I gained the courage to go for the gold. To get the best doctor out there for my problem and to feel entitled to stand up for myself when I needed to. This is without doubt a superior group and the most valuable support for those with Fuchs Dystrophy. Their work is outstanding. I myself am a former support group developer and facilitator. I have over ten years of experience working with self help groups and advanced training in the administration and development of such groups. I am no longer running my program and am very happy to just be a member who has greatly benefited from the work of the Corneal Dystrophy Foundation.

The Great!

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

Because of this group I found the best information about what I needed and where to go to get the best help there is. They gave good help with no axe to grind.

Ways to make it better...

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

I know they don't allow what they call doctor bashing. But some way that we could let others know of bad experiences in a log form for future people. There are some doctors who are not very good and people be should be warned to avoid them.

More feedback

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

Finding the help I needed at a time when I was in great distress

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

Kind

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

get a campaign so that the information that is on this website could be found in public libraries and doctors offices world wide. It is an organization that has a world wide base.

Ways to make it better...

At times an off screen facilitator was very harsh and I did not appreciate the unkind words. They were very hurtful and totally unnecessary.

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

Getting people to know about its existence including doctors. The people on this site know more about Fuchs than most doctors.

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

I am tremendously thankful to the unpaid all volunteer staff who work so hard to help others with their problems with this terrible disease. They are gems. Even the one who had some too harsh words to say to me.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

MY ROLE:
Client Served & I report what my experiences as a person with Fuchs Dystrophy and other eye issues who has undergone two corneal transplants plus related surgical procedures.

The Corneal Dystrophy Foundation
May 21, 2010

I was told I would need a partial cornea transplant. I was terrified. I knew nothing about how to select a surgeon to do this nor what were the symptoms that indicated the surgery was necessary. This group explained to me about the symptoms and what they indicated. It also provided information as to how to find a good doctor and the actual names of doctors that did the procedure so I could check them out and decide who would be best for me. It also provides help and support when I have had problems come up associated with the transplant. You really can't find a better group than this one for helping people deal with the process of corneal transplant.

The Great!

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

By helping me find the information to make the selection of which doctor to use and what kind of procedure to have, they help me get back my eyesight which I was loosing rapidly. The information given here is invaluable for people who have Fuchs.

Ways to make it better...

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

Can't think of any right now.

More feedback

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

I got help when I seriously needed it in a place that was safe

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

Helpful

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

Do help people around the world learn more about their disease and take charge of it.

Ways to make it better...

The Yahoo interface we use was easier to work with.

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

It needs money to provide more widespread knowledge of its information. People need to know it exists. It really is a major service to people with Fuchs.

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

I am eternally grateful to this organization. I would never have had the access to critical information or the type of support I needed without this group. They have been my lifeline to getting the knowledge needed to treat this illness.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

MY ROLE:
Volunteer & Participation helped me learn how to make decisions about my cornea transplant.