The Corneal Dystrophy Foundation

Rating: 4.91 stars   78 reviews

Issues: Health

Location: 6066 McAbee Rd San Jose CA 95120 USA

Mission: Our MISSION is to increase public awareness of corneal dystrophy, potentially blinding diseases affecting the transparent front part of the eye.
Results: We have helped about 6000 people in over 70 countries with support, knowledge and inspiration to overcome their genetic sight disability
Target demographics: People around the world with corneal dystrophies. People who wish to help educate others by supporting our cause. Ophthalmologists who should check for corneal dystrophies at every eye examination with a simple slit lamp test.
Direct beneficiaries per year: 700
Geographic areas served: Nationwide
Programs: An bi-annual patient oriented Corneal Dystrophy Symposium with surgeons and researchers as speakers who are recognized authorities on Corneal Dystrophy and methods of improving quality of life. A live DVD of the proceedings is made and becomes an incentive gift for donors.
2013 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

1 person found this review helpful

Finding the CDF was a godsend to me when I was desperately trying to learn more about my corneal (Fuchs) dystrophy. I was in the dark about my options for management of the disease, options for care and, ultimately, surgery. I cannot say enough about the weight that was lifted off my shoulders when I opened the door to the CDF. Knowledge is power, and support of peers and experts gives one hope. Empowerment and hope are a huge part in the processes of healing and wholeness. Thank you, CDF, for giving me both!

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

1 person found this review helpful

All the information and support I could ever imagine needing was provided by the wonderful organization.

How would you describe the help you got from this organization?

Life-changing

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Very Well

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

1 person found this review helpful

They have been so helpful with information and contacts with other corneal dystrophy patients. :) A wonderful resource. Highly recommended. :)

How would you describe the help you got from this organization?

A lot

How likely are you to recommend this organization to a friend?

Definitely

How do you feel you were treated by this organization?

Quite well

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

1 person found this review helpful

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.

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.

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.

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?

2010-9-01

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Thank you for the wonderful review. Please feel free to privately email with with any complaints about moderators or other staff.

1 previous review
Rating: 5 stars  

12 people found this review helpful

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.

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.

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

Can't think of any right now.

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?

2010-5-01

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Rating: 5 stars  

1 person found this review helpful

when I was first diagnoised with fuchs corneal dystropy I was only told that I would go blind if I did not eventually have transplants. I was scared and felt very isolated as I didnt know of any one who had this problem. I attended my first fuchs friends gathering and saw a whole bunch of happy people who had transplants and they could SEE. It took away alot of my fear and as I attended more conferences I recieved alot of education and listened to some of the top specialists in the country. The corneal dystropy foundation is very important to all of us who participate and all those yet undiagnoised. sincerly Mary Oswald

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

I read the digests on a daily basis from people reaching out to people for support and information.

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

none

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

going to the conferences..meeting others with Fuchs.

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

very professional, very helpful

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

help people who do not have the funds to get the help they need.

Ways to make it better...

I liked when we use to take a picture of attendees holding up fingers for how many transplants.

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

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

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-1-01

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Rating: 5 stars  

1 person found this review helpful

I have a rare eye disorder (Fuchs' corneal endothelial dystrophy) and found the Corneal Dystrophy Foundation and their online discussion group (Fuchs' Friends) when googling for general information. They offer a very wide and useful wealth of information about what experiencing the disease has been like for others, what surgeries are done to treat the disease, and what sorts of experience real people have had with these surgeries. The online discussion group is set up so that group members can also give each other the names of surgeons in different parts of the U.S. who specialize in this type of surgery. The online discussion group has a "moderator," which means, as far as I can tell, that someone knowledgeable reads all the posts daily, and generally helps to keep discussions sensible and well-informed. In addition, I did a search of old online discussion group posts for mention of my other eye disease--glaucoma--and found information indicating that there was an important question I was going to need to ask my own doctor. In addition to the things I have mentioned, this group also does periodic conferences, where recent advances related to treatment of the disease are discussed at laymen's level. However, I haven't attended any conferences yet.

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

(I covered this in "review," above.)

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

I can both find information and interact online with others whenever I want to (and the information is sound).

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010-7-01

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To clarify, ALL postings are read by at least one and sometimes several moderators but all postings can be read by all group members. Responses to queries may come from any experienced person in the group. It operated as a sort of Delphi group and all content since our start more than a decade ago is available to members with Yahoo IDs.

Rating: 5 stars  

1 person found this review helpful

I had Fuchs' Dystrophy and prior to joining The Corneal Dystrophy Foundation, I had no one who knew about the disease except for my ophthalmologist. After becoming a part of the group, I realized that my ophthalmologist was not current and correct about Fuchs' Dystrophy found my way to a knowledgeable cornea specialist. By then I had blisters on my cornea which complicated the outcome of the overdue DSAEK. Due to complications, I went to one of the top recommended Fuchs' cornea specialists in the US and am now Fuchs' free and my vision is improving rapidly. If I had never joined this great organization, I fear that I would have continued to trust the poor advise I was being given, I would not have been aware of the very best specialists and, I believe, my eyesight would have been significantly compromised. The education, encouragement, and knowledge I received from this group was invaluable. Such small things like how to wash your hair after surgery, were so helpful. I truly believe that anyone in the journey of Fuchs' Dystrophy would benefit greatly from being a member of The Corneal Dystrophy Foundation.

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

The most important results for me was the knowledge and encouragement from others who have this rare disease. Reading their stories and following their journey made my journey much easier.

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

Education, information and sharing about my rare eye disease.

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

1) Help to establish ways to provide continuing information to all eye care professionals about Fuchs' Dystrophy. 2) Find a way to reach out to the many suffering from Fuchs' Dystrophy and aren't aware that help is available.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-5-01

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Rating: 4 stars  

1 person found this review helpful

My mother was diagnosed with Corneal Dystrophy in 2004 shortly after having both her eyes operated on for cataracts. We had not fully made the connection to her mother’s diagnosis of the same condition, which was diagnosed decades earlier, until reading up on this condition on the Fuchs’ Friends website. I feel indebted to the Fuchs’ Friends website for educating me on Fuchs’ Corneal Dystrophy, providing information on what to expect from this condition and the types of surgery that were available. Mom ultimately had DSAEK surgery with a surgeon that we found on the physician locator. Prior to finding this website, I had not heard of a partial thickness cornea transplant and this website educated me on the types of surgery that were currently available, and what questions should be answered by a surgeon that would potentially be performing surgery. After researching this condition on the Fuchs’ Friends website, I felt knowledgeable enough to ask questions and understand what we were about to experience with surgery and recovery.

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

My mother was less scared of going completely blind after having been provided information from this website.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-2-01

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Rating: 5 stars  

1 person found this review helpful

Before I found the Corneal Dystrophy Foundation, I was totally in the wilderness. Over the years, several ophthalmology professionals had mentioned that I had Fuchs' Corneal Dystrophy but all dismissed it as nothing to worry about. When I first heard the word "transplant" I became very alarmed. Fortunately, I found CDF where reliable information was available and joined the support group they sponsor, Fuchs' Friends. I also attended the CDF symposium at Duke University where there was opportunity to hear from cornea specialists with experience and time to interact with them personally. With the knowledge gained from the support group and the symposium, I was very comfortable going forward recently with two partial corneal transplants. The Foundation provides a valuable service to those who have this disease because it if so difficult to find reliable information and to locate a cornea specialist with expertise in treating Fuchs'. I am greatly appreciate of all who contribute their time to help others.

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

This organization helped me find my way as I made a decision on the best treatment.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-5-01

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Rating: 5 stars  

1 person found this review helpful

I discovered the wonderful folks at the Corneal Dystrophy Foundation in 2002 at the fuchsfriends website, long before they became the foundation. I had spent the previous years in desperation as my sight continued to deteriorate from Fuchs Corneal Dystrophy with apparently no good options for a cure. I had been going to Johns Hopkins every six months for several years and each time, was told that my condition was not bad enough to do a full cornea transplant. I felt as though I was being dismissed with a pat on the back without ever being heard about how my poor vision was affecting my life. Through the fuchsfriends group and site, I learned that my condition was often under or misdiagnosed. I also learned that the women who tried to ask questions of their doctors were often put off and sometimes not even told the name of their condition. Through fuchfriends, I was able to consult with a doctor in Portland, Oregon (I live in Virginia) and was lucky enough to have him accept me as a patient for a brand new procedure at that time called DLEK (now DSEAK and other acronyms). It was through my education at the fuchsfriends message board and website that I was able to walk away from Johns Hopkins and take the plunge with Dr. Mark Terry in Portland. The surgery went perfectly and I went from legally blind to 20/50 in two days. I don't know where I would be today without all the wonderful folks at CDF who give so willingly of their time, knowledge, experience and compassion. After my first surgery, I was able to go to the annual fuchsfriends meeting in Atlanta GA. I was able to get myself on the plane and find my way to the hotel and meeting. When I had gone to Portland with my husband, I could not even read the gate numbers so this was a huge accomplishment for me. I will always be grateful to Dorothy, Signe, Bob and all the others who make this foundation work. They have helped and empowered hundreds of women just like me giving us the information and strength we needed to get our lives back after having Fuchs Dystrophy.

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

my own life. See above comments.

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

Get them more funding and publicity.

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

The caring combined with expert knowledge that really helps to give members their lives back after fighting Fuchs Dystrophy.

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

So informed and connected with professionals and doctors who would help their members. Caring, compassionate, smart and funny all at the same time.

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

Get their message out even more and hopefully give themselves some salaries for all the time and effort they have selflessly volunteered. And perhaps fund surgeries for people who cannot have the surgery due to financial situations.

Ways to make it better...

If I had discovered them sooner!

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

Is getting the funds to keep everything going.

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

THANKS!

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2010-5-01

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