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: 4 stars  

1 person found this review helpful

I found out five years ago that I have Fuch's Dystrophy. I have learned so much through all the wonderful coordinators of this site. I will be having a partial corneal transplant very soon and I chose my doctor because of all the wonderful things other patients said about him. If I have any concerns I know I will find the answer here.

Would you volunteer for this group again?

Unsure

For the time you spent, how much of an impact did you feel your work or activity had?

A little

Did the organization use your time wisely?

Okay

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

1 person found this review helpful

I have belonged to this group since before my first transplant in 2007. They are a kind and informative group. They keep us current on the latest medical advances for our disease and the members provide support before, during, and after surgery. When people are diagnosed with Fuchs' they are usually shocked and afraid of losing their sight. This group educates, helps people find the right doctor, and can answer many of your questions.

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

Group functions well as it is.

Would you volunteer for this group again?

Likely

For the time you spent, how much of an impact did you feel your work or activity had?

Some

Did the organization use your time wisely?

Quite well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

2 people found this review helpful

My experience with FUCHS cornea transplant started out badly with a local surgeon who offered up his own opinions on post op care. Unfortunately, things went badly. The great volunteers on this website patiently informed me about what has worked with others and soon I was able to select a surgeon who had the experience and knowledge to re-do the surgery and later to operate on the 2nd eye.

I credit these knowledgeable volunteers with saving my vision. They are the best!

Paul, Kennewick, WA

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

not change a thing.

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

A little

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

2 people found this review helpful

I am a recent member of the Corneal Dystrophy Foundation. I have found them to be quite informative concerning the condition and very helpful when it comes to choosing a physician. I am glad to be a member.

Would you volunteer for this group again?

Unsure

When was your last experience with this nonprofit?

2013

 
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Rating: 5 stars  

1 person found this review helpful

The Fuchs friends group when an invaluable help to me when I first received my Dx of Fuchs Corneal Dystrophy (FCD). The provided written information and access to other web sites that helped me to understand that there are surgical techniques available to correct the disorder, and that I am not destined to be blind because of FCD. This group continues to give support and to identify corneal surgeons who perform the appropriate corneal surgeries.

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

Yes.

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...

The information they provide

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

Extremely helpful.

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

Give scholarships to conferences for those of use who might find it difficult financially to attend.

Ways to make it better...

I like everything the way it is.

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

Insufficient funding

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

I have not taken advantage of getting their reasonable priced DVDs from the conferences

How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010-10-01

 
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bob13 (Nonprofit Staff) wrote:

Fuchs' Friends is an online outreach Yahoo group that The Corneal Dystrophy Foundation (CDF) has operated for the past decade. Many of the Fuchs' Friends don't realize that the group is part of the CDF and so the often use Fuch's Friends when talking about the foundation

Rating: 5 stars  

1 person found this review helpful

Several years ago I was diagnosed with Fuchs' Corneal Dystrophy. I was unable to see defination and was bothered greatly by glare, being unable to distinguish people, signs, animals and having eye strain upon reading for any length of time. In 2002, I went to the internet and found the support group, Fuchs Friends. I learned all the latest advances in treatment and where the best specialists were located. I chose to travel a long distance to see Dr Mark Terry of Portland,OR who performed a new procedure, a partial transplant,(DLEK) cataract surgery and implant in 2004. In 2007, I had the DSAEK, cataract removal and implant in the other eye. Had it not been for this group, I would never have had the knowledge and courage to make this decision to seek the best resource possible. Even though I see perfectly without glasses and no longer have Fuchs', I have chosen to stay with the group and help others. The Corneal Dystrophy Foundation and Fuchs' Friends has more accurate information on this disease than can be found anywhere. If only all candidates for corneal surgery could find this group first, there would be less cases of botched surgeries by doctors who do not recognize or understand this rare disease..

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

numerous incidences where people find what they need to know in order to make informed decisions about their health care.

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

find a way to make it more accessible to those who need it and to be able to distribute more information to potential donors, people with Fuchs' and to doctors who need training in recognizing and treating this disease.

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

the great people I have met, the knowledge I have gained, and the people we have helped. The symposiums, all of which I have attended.

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

great, caring people.

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

educate a lot more doctors, donors and potential patients.

Ways to make it better...

I had more time to devote.

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

lack of funds to do the work that needs to be done. More Volunteers to share the load. Creating better, more informative symposiums each year.

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

I appreciate all the hard work that the volunteers and board members do to make this Foundation the best I have seen.

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

The Corneal Dystrophy Foundation was established several years after I joined the support group, Fuchs Friends. The foundation has formalized the efforts that go into providing accurate information for people with this disease and has brought patients and doctors together so that doctors feel like they are partnering with their patients and the foundation. Through the efforts of the foundation, patients are educated about advances in treatment and helped to seek doctors who can provide advanced treatments. The result is that patients today can recover from a cornea transplant in 2-3 months versus 12-18 months for previous treatment methods. It has been a revolution.

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

my own eyes. My first transplant was before I joined the group. It was the traditional transplant - the only type available at that time. In 2003, I had my other eye done using the new technique. I would not have known about it without the group.

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 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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bob13 (Nonprofit Staff) wrote:

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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