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  

2 people found this review helpful

During a period of dealing with other health concerns this year. I was diagnosed with FCD. I really did not have time to focus on this as I was told I may eventually need surgery but years down the road. I came home and did a search on the internet so I could start to learn about Fuch's . I found Fuch's Friends website which is made possible by the Corneal Dystrophy Foundation and decided to join. I thought I could learn a little before I needed surgery down the road. I read all the posts each day and started to realize that the disease was affecting my life way more than I realized. I had just learned to cope. The thing that made me realize that I probably needed surgery soon was an incident that happened soon after seeing a second Dr. who told me I did not need surgery yet. Come back in a year. I was driving as the sun was setting and I was totally blinded by it and had to stop the car in the middle of the road. I could only think about what could have happened if I had had my 2 grandsons in the car and someone would have hit it.

I decided I needed to see one of the doctors recommended on the site. I did and had surgery 5 weeks later done by one of the top corneal surgeons in the county. The second is scheduled for Nov. I would never have known any of this without FF and would have still been just coping. Now I can see things at night like never before. The world is a totally different place at night for me and I have only had the first surgery.! The things that I have learned from The Corneal Dystrohy Foundation and Fuch's Friends have been invaluable to me. I am very thankful for the support from members and moderators and this journey would have been much more difficult without their help. I more than likely would still just be coping.

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

make more support groups that meet for lunch a few times a year throughout the U.S. so that more people would have access to them.

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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Role: General Member of the Public
Rating: 5 stars  

1 person found this review helpful

The fuchsfriends yahoo group is made possible by the Corneal Dystrophy Foundation. If you have Fuchs or have a family member or friend with Fuchs, membership in this support group is a must. I was diagnosed over 20 years ago and could find nothing at that time to educate me on this disease. Fortunately, I found the Corneal Dystrophy Foundation website and their Fuchs Friends support group about 7 years ago. There was a symposium held in my area shortly after that which I attended and learned a great deal about the partial transplants that were then being done. My corneal specialist knew nothing about these partial transplants and was only doing full thickness transplants. My vision quickly deteriorated in the last 2 years and, only because of Fuchs Friends, I knew what procedure I wanted and what doctor I wanted to do it. As of this month, I am Fuchs Free and have crystal clear 20/20 vision. This Foundation and support group provide invaluable support and information.

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

2 people found this review helpful

I subscribe to a forum or Yahoo email group related to the Corneal Dystrophy Foundation and I believe that is also managed by by them. As a member of the email group I was able to learn a great deal and connect with others who were going through the same thing as I. If I had questions they were usually answered by someone in the group on a timely basis. I have had both of my eyes corrected now and am blessed because of that. Since I no longer have the problems I rarely have the need or time to stay involved, but do still receive the emails just to stay connected.

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

None known.

Will you volunteer or donate to this organization?

Unsure

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2010

Was this review helpful? 
Rating: 4 stars  

1 person found this review helpful

I have been a member for many years and gained much insight and knowledge about Fuch's. I found the Doctor who did my surgeries through this group and have had a very good outcome. I have gone to two sysposiums that Fuch's Friends has had and meet many wonderful people. We have just recently started a local group here in the Chicago area and it is go great to talk to others with my eye disease.

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

Encourage more local groups and local meetings.

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

Was this review helpful? 
1 previous review
Rating: 4 stars  

5 people found this review helpful

I learned much about my inherited eye problem and found a great Doctor where my Winter home is near Ft. Myers, Florida. I have had one surgery so far and will need three more in years to come. I have gone to one meeting of this foundation at Duke University in North Carolina and met some wonderful people. I follow their e-mailed blogs and use their site for further information on Doctors and such.

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

Yes, and they have been very helpful in educating me about my disease and getting help for it.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010-5-01

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

The Fuchs' Friends Forum has provided me with a wealth of information and advice, especially when I was first diagnosed. Through the site I found a specialist who performed a Corneal Transplant on me. The results were miraculous.
I think the Foundation which supports this group has done a great service to those who suffer from this disease.

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

I have no changes to suggest

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

Wonderful group of caring and very knowledgeable people who have provided excellent information about Fuchs Dystrophy, including cutting edge transplant techniques and medical providers in various areas of the US. This knowledge has helped me and many others to locate and converse with corneal specialists to obtain the best care available for our relatively rare disease. I first joined this group in 2005 when diagnosed, and returned this year when I became symptomatic. Through this group I was able to locate and schedule transplant surgery with an outstanding specialist.

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

Make Yahoo go back to the 'old' way of reading and searching group posts!

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

Wonderful group. Excellent information. Very helpful to me personally and, I am sure, to many others. I will continue to support financially even though I no longer read the emails daily because of my busy schedule.

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?

Very Well

When was your last experience with this nonprofit?

2013

Was this review helpful? 
Rating: 5 stars  

1 person found this review helpful

Joined this group as soon as I was diagnosed with Fuchs. Extremely helpful. Thank you for all your expertise.

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?

Very Well

When was your last experience with this nonprofit?

2013

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Rating: 5 stars  

1 person found this review helpful

Great group. Helped me through my partial corneal transplants for Fuch's Corneal Dystrophy over the past 10 - 11 years. Always had the latest technical information available on the web site and discussion group.

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?

Very Well

When was your last experience with this nonprofit?

2013

Was this review helpful? 
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

Was this review helpful?