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The Corneal Dystrophy Foundation

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Nonprofit Overview

Causes: Eye Diseases, Blindness & Vision Impairments, Health, Specifically Named Diseases

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.

Community Stories

50 Stories from Volunteers, Donors & Supporters

2

Client Served

Rating: 5

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!

1

Client Served

Rating: 5

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

1

Client Served

Rating: 5

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

1

Client Served

Rating: 5

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.

Comments ( 1 )

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bob13 10/01/2010

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

Previous Stories
12

Volunteer

Rating: 5

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.

1

Client Served

Rating: 5

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

1

Client Served

Rating: 5

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.

Comments ( 1 )

profile

bob13 10/01/2010

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.

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 4

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.

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

When first diagnosed with Fuchs' Corneal Dystrophy, I had absolutely no information. I could only react with fear and anxiety. I began to read the CDF information and gradually settled down because I was able to gain knowledge from the literature as well as insight from people who had the same disease as I. I learned where to find top notch surgeons, how to care for my eyes, exactly what the disease was and what the symptoms were, and finally, the expected end result of a corneal transplant. The information I found here was correct, understandable, and most of all, empathetic. Finally here was a place where I could find out what a transplant entailed, where I could get one and what the recovery was like. My fears were allayed, I gained insight into this rare disease, and I was ready to make a plan for myself. In the literature I found what the usual diagnostic tests were, what the 'numbers' meant, when I should have them. Again, information was in place which brought my fear into a manageable level. With the Yahoo group supported by the CDF, Fuchs' Friends, I was able to communicate with people who had my same problems. Here was a place where I could ask my questions and receive answers from those who had gone before me. Here was a forum which helped me to understand my disease and helped me to shape my decisions as to my care and comfort of day to day living. I found my transplant surgeon on the list of doctors and read message after message of people who had used him. My experience at Fuchs' Friends and through the CDF info sent me 1200 miles to a surgeon who is internationally known for his technique, research, and abilities. Without the written word: website and informational literature, I would have had no idea where I could find good treatment. Today, after two partial cornea transplants, I have perfectly corrected vision. I can drive at night, I can survive the bright glare of the summer sun, I no longer have a corneal dystrophy. I could not have achieved this without the support of CDF.

1

Client Served

Rating: 5

Fuchs’ Endothelial Corneal Dystrophy gradually stole my independence, my confidence and many meaningful parts of my lifestyle. Because I found the Corneal Dystrophy Foundation and their support website, Fuchs’ Friends, my story ends well. Additionally, my experiences ultimately convinced my surgeon to adopt the endothelial keratoplasty into his practice of ophthalmology. Without the Corneal Dystrophy Foundation, these outcomes would be quite different. Since learning to read before age five, books and, by extension, the entire visual world had been at the center of everything I accomplished. All of that changed when my prescription glasses for myopia and some minor astigmatism stopped working for me. That led to a diagnosis of Fuchs’ Endothelial Corneal Dystrophy and explained many of my growing number of falls, fender bender accidents and apparent clumsiness. Though a glaucoma specialist to whom I was referred explained the disease well and left me feeling that this was not major, when the first transplant left me with astigmatism that did not recede, I realized that my world had changed. I now depended upon others for transportation. I could not read. All images were blurry, colored shapes without detail. Sunny summer days hurt my eyes. Though a Rigid Gas Permeable contact lens provided normal vision in one eye, it was often painful and did nothing to buoy vision in the yet un-operated and declining other eye. Worse, nobody offered solutions. My busy doctor preached patience, but gave few reasons. My doctor husband, a doctor but not an ophthalmologist, could give limited help. Though he queried his colleagues, Fuchs’ is a specialized area that they had little experience in treating. I was fast becoming isolated and feeling lost. At the urging of my husband and my local surgeon, I joined the Corneal Dystrophy Foundation’s support website forum, Fuchs’ Friends. As I grew fluent in the medical terminology and learned more about the disease, my relationship with my doctor changed. He began giving me more information and answering more questions. Then the Foundation announced that it was hosting a symposium featuring a discussion and question/answer session with a few of the most often referenced doctors in the field. My husband and I decided to attend. The current information, the expertise, the academic prestige shared with us and other Fuchs’ Friends at that event impressed us both. I decided that my second eye would have a less invasive surgery that was not yet widely practiced by Chicago’s ophthalmologists but was the subject of most of the discussions at Fuchs' Friends and at the Corneal Dystrophy Foundation symposium. That symposium convinced me to seek expertise from a doctor on the Corneal Dystrophy list of member-recommended surgeons. My husband helped with the research by searching the professional journals to confirm what the Foundation knew about this doctor, and he, too, was convinced. Within a few months I traveled to another city where I had an endothelial keratoplasty done by one of the pioneers of the technique. The results were optimal, and I was referred to my local surgeon for followup care. The local surgeon who had done the traditional transplant was delighted at the opportunity to observe and compare his method with the newer one in a single patient. I continued to progress rapidly, and the surgeon was convinced to learn and adopt the endothelial keratoplasty into his practice at a major Chicago medical center. The story has a happy ending. Though my eyes are still a work in progress, I have resumed my normal activities. My vision is now correctable to the ideal 20/20 on the Snellen vision test chart. Most important, I have regained my confidence and my independence. The Corneal Dystrophy Foundation enabled me to take charge of my care, my health and my life once more.

1

Client Served

Rating: 5

I thought I was knowledgeable about the disease that was causing my failing eyesight and ultimately encouraged my early retirement. Since it is an inherited disease, I had observed my father's experience and assumed his recommended physician's treatment plan was state of the art. This treatment plan consisted of successive exhortations to be patient and "modify my lifestyle,' ie, give up doing the things that gave my life purpose and meaning. Naturally, I became depressed. Through the wise counsel of Fuchs' Friends, I discovered that, partly through the support of the Corneal Dystrophy Foundation, the surgery for Fuchs' Dystrophy had been greatly improved, and I was already a candidate for the new less invasive procedure. No more waiting! Then the knowledgeable members of Fuchs' Friends coached me through the process of finding a capable surgeon, the awkward transition from my old surgeon, and every step of the surgery and recovery, including a few complications, which would have been distressing, without the reassurance of those who'd experienced them. Today I have excellent vision in one eye and am awaiting my second surgery with enthusiasm. I know that I will end driving, reading, and writing again and restored to a useful and contented member of society.

1

Client Served

Rating: 5

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.

1

Client Served

Rating: 5

I was diagnosed with Fuchs Corneal Dystrophy in 2002 but was told I was in the early stages and not to be concerned. But by 2004 my vision was getting worse, I had given up driving at night bevause of glare issues and halos around car lights but several Opthamologists thought this was caused by cataracts that weren't ripe enough to be removed. I continued to suffer with declining vision and my work as a nurse began to be effected, In 2006 and did a web search on Fuchs Corneal Dystrophy and found Fuchsfriends--I wrote to them, became a member and found a group of people with extensive knowledge of this disease. They offered suggestions r/t sunglasses to wear to diminish glare issues, they recommended Corneal surgeons I could contact to get a second opinion. Because of this wonderful organization I found a Corneal surgeon in Hershey Pa (6 hours from my home in Erie Pa)After meeting this surgeon, Dr Rosenwasser, I knew my eyes were in good hands, he did my cataract surgeries in 2006 and I had my first DSAEK in July, 2008 and am looking forward to having my Left DSAEK on June 8, 2010 This group has been supportive, they answer all questions, offer encouragement and give you knowledge through brochures, DVD's of past symposiums and personal stories on their website that depicts several members journies with this fickle disease. It is because of them I am on the road to being Fuch's free

1

Client Served

Rating: 5

Twenty-five years ago at the age of forty, my optometrist told me he detected Fuchs' disease in both of my eyes and referred me to an ophthalmologist who told me my Fuchs' disease was in the early stages but that cornea transplants might eventually be necessary. My vision gradually became worse over the years and I was referred to a cornea specialist in 2008. When I was told that it was time for me to consider surgery, I realized I needed information in order to make the important decisions ahead. One of my three sisters was diagnosed with Fuchs' and she found out about the Corneal Dystrophy Foundation and Fuchs' Friends. After hearing about the educational benefits of this nonprofit organization, I joined Fuchs' Friends and everything I read leading to my two successful DSAEK surgeries this year was invaluable. Through this organization, I was fortunate to find an excellent, skilled surgeon, Dr. Alan Kozarsky, located in Atlanta, GA. The Corneal Dystrophy Foundation's symposium videos were helpful to me as well. I am thankful for The Corneal Dystrophy Foundation and the intelligent individuals associated therewith who help and inspire everyone on their pathway to better vision.

1

Client Served

Rating: 5

I, like so many other Fuchsfriend clients, found my way to this board because of cataract surgery done my an ophthalmologist who knew nothing of this genetic disease. In August of 2007,two months after cataract surgery, I was still seeing "through waxed paper" and asked to be sent to Houston to a specialist. In Houston I was diagnosed with Fuchs' Corneal Dystrophy and was told I would need a cornea transplant in order to see and stop the blistering. Panic swept over me. I couldn't think - what questions should I ask? Nothing came to me. I called a friend who worked in the medical complex and told her what was happening. We met for lunch and she handed me a paper with the Fuchs' Friends website address. As soon as I returned to Midland I contacted them. They changed my life! So knowledgeable and compassionate. I learned the questions to ask and the names of Drs. in Houston who could help me. I was able to speak with patients of these Drs. and through them chose Dr. Goosey. I have now had two DSAEKs and can see again! No more blisters, no walking off curbs, can drive at night again, can play with my grandchildren! This organization picked me up, dusted me off and set me on the path to complete healing! There are many other people out there that need their help but Fuchs' Friends needs funding to be able to reach out to those who need them the most. The volunteer staff are there to help 24/7 and how they keep up with it, I know not. I still watch the message board everyday and will "pay it forward" whenever I can.

2

Client Served

Rating: 5

I have been a member for several years to the fuchs friends website. Diagnosed with corneal macular dystrophy, an autosonomal recessive trait, there are not many of us in existence. I am not legally blind but have numerous issues stemming from the condition. A few times a year I visit a corneal specialist where I can try to squish several months of concerns and issues into a thirty minute appointment. The fuchs friends site is a support place, where anytime of day or night, when things are overwhelming, I can fit in. I can vent and ask for help and just belong somewhere. A group of people who share similar experiences with the many issues tied to being "almost blind" yet still coping with everyday life. I hope that funding can be provided to allow this group to grow in hopes to reach out and empower others with corneal issues to not give up- life is still ok, even when you can't see as clearly as others. Thanks fuchs friends and all those who support it.

1

Client Served

Rating: 5

I was told I had fuch's dystrophy when I was in my early 50s. I was told what I had and that Other than putting Muro 128 in my eyes when things got blurry, there was really nothing to do until my vision declined to the point I was leaglly blind, than they could do a corneal transplant. I was very scared, contacted my family to see if ayone else had ever had this. No one had so I ignored it as much as possible, got new glasses often and addapted to the fog, distortion of lights and told myself it was age, and everyone saw like that. After 13 years I no longer drove at night, or in the rain, I had moved to Montana and the driness of the climate helped. Than because of family obglations I moved to Minnesota, and had a computer to be used, and use it I did. Looked up Fuchs' Dystrophy and there it was Fuchs' dystrophy Foundation, and a whole new world opened up, I was not alone, I didn't have to wait for total dependance upon others. What I was seeing was not age, I was 63, I made an appointment with an optometrist, I told her I had Fuchs' Dystrophy, she looked in my eyes and said Oh my, you certainly do. Low and behold not everyone saw starbursts around lights, nor did other people my age see through fog in the morning or if it was damp out see throug fog all day. The glare and pain of being in the sunlight was not a problem for them, their eyes did not burn and sting most of the time, they didn't fall as often over a shadow on the sidewalk, or miss steps, there was light at the end of a very bleek tunnel. She sent me to a corneal surgeon, Dr. Daniel Skorich, he said your ready now for a transplant, call me when you are ready. You see, I was still scared, I needed to take this all in, I needed to find out more about the surgery. Back to the Fuchs' Foundation, and from there to Fuchs' Freinds, to read and find other people with this to hear their stories, and ask questions, to mull this all over in my mind. To let the fear go as I read there accounts of Fuchs'. This spring I went for a mn. drivers license, couldn't see the letters, try this other machine they said it's brighter, when I said Oh yes thats an O R L..They said those are numbers. April 7, 2010. I hae a triple, DSAEK, cat, & IOL. I can read without a magnifying glass now...I had been using one for about 4 years. Only one eye hurts when it rains, and that too will be fixed. I can truthfully say the Fuchs' Foundation was life changing for me.

1

Client Served

Rating: 5

When I was told that I had Fuchs' Corneal Dystrophy, I had never heard of the condition. Fortunately, I found this organization through the internet. The Corneal Foundation provides basic, easy to understand information about Fuchs', a database of specialists whom members have found to be helpful, a list of questions to ask your doctor, and other valuable resources. The Foundation has sponsored several symposiums with the top specialists in Fuchs' participating. The proceedings are available on DVDs for a nominal contribution for those of us who could not attend. In addition, the Fuchs' Friends message board allow you to ask questions and get answers from people who have experienced the same problems. Some of those who respond are, like me, simply patients who can relate their own experiences, but others are more than patients - they have acquired a depth of knowledge that is amazing. This has been a wonderful resource for information and support. Among other things, they helped me to realize that the corneal transplant which Fuchs' patients often need is not nearly as difficult as I expected. My journey from diagnosis to Fuchs' Free with two transplants has been much less difficult that it would have been otherwise.