I find the National Keratoconus Foundation a great organization. They help people finding professionals that can help them manage their disease through contact lenses and other options. They keep up to date on research, and act as a clearing house of information for their clients. They have very helpful booklets that are in plain language on Keratoconus and Corneal Grafts that I give out to my new patients who have this disease. Although I discuss these options with my patients, I find it very helpful to have a booklet that also has these options in writing that they can refer back to. They are also great booklets for family, and friends so that they too can understand what Keratoconus is all about. They publish newsletters, and maintain a great chat site. They also hold seminars. Their administrator is excellent and very dedicated. I personally find the chat site interesting. It has given me a lot of insight into how patients assimilate the information they are given and what questions they often have, and in what areas there is often confusion.
I have a family member with macular degeneration and as so, am at risk for developing it as well. The information on this website has been extremely helpful for my family so far. I would recommend that anyone who has the disease or wants to know more information about it visit the website. As they are a resource for people with diminished vision, they thoughtfully publish everything in larger font sizes.
When my son was diagnosed with Keratoconus his grades had already been failing in school and he was frustrated that over the course of a year spent going to eye doctors we couldn't find a contact that he could either see through or that stayed in his eyes! That is when I turned to The National Keratoconus Foundation, a program of The Discovery Eye Foundation website for help. Within a day we received a list of eye Doctors in our state who are affiliated with NKCF. These Doctors understood that disease and the issues of good sight correction. After One Doctor visit my son had a pair of contacts he not only could wear but could see well with too! Now each month when we get a newsletter update we both read the articles and discuss the information. It has made dealing with the disease easier now that we are better informed. Thank you NKCF for your life changing help with this complicated and not well understood disease.
As a doctor of optometry specialiIng in keratoconus, i rely heavily on the national keratoconus foundation to support and educate my patients throughh all aspects of this disease. I remember practicing before nkcf was in existence and its presence and service to the public and those with the disease is of immeasureable importance. Thankyou cathy warren and the whole national keratoconus foundation organization.
I knew nothing about keratoconus (KC) when I was diagnosed. I was frightened and worried about my future. When I found NKCF online, it was such a relief. I was not alone! There were doctors who were ecperienced with this condition; there were patients like myself who really, truly knew what I was going through. It was a tremendous support. Their day-long seminar at the Skirball was very informative, and a chance to meet other KC patients in person. When it came time for my first cornea transplant, NKCF was there, too. Their booklet about cornea transplants was extremely helpful in my planning and knowing what to expect. And it was free! Although my transplanted corneas are healthy now, I still visit the NKCF and support them with my participation on the chat board and monetary donation. This organization is suberb, and has made a huge difference in my life with KC!
I tell all my keratoconus patients about NKCF. It is the first place I send them for reliable and up to date information on their condition.
The Discovery Eye Foundation is a highly respected organization in the field of eye care. As director of MD Support, I am proud to have been partnered with Macular Degeneration Partnership, a division of Discovery, for over 10 years. Thousands of patients have received considerable benefits from this outreach under the caring and knowledgeable guidance of director Judi Delgado. Discovery Eye Foundation and MD Partnership get my highest recommendation as one of the nation's top nonprofits!
This organization provide a badly needed informational service to people suffering from keratoconus. This disease is fairly rare and thus it can be very difficult to get timely and accurate information about it. Thank you. Bill Simkins
The first time I heard about the NKCF/DEF was almost 20 years ago. I was feeling a little down and felt sorry for myself because of my keratoconus. It was so comforting to read other people stories and feel that I’m not alone. I’ve been receiving the quarterly newsletter for many years and keeping up-tp-date with the latest discoveries in the KC treatment. Because of the DEF information, I was more informed patient, asking my doctor and optometrist questions and getting more information and answers to be able to get the best treatment for me.
I am very thankful for the information that Discovery Eye Foundation distributes to the KC community. I have learned valuable information that helps me take better care of my eyes and stay informed on the latest research and surgeries. They do a great job disseminating information!
Hello, I have been a user on the Discovery Eye Foundation website and newsletter for many years. About 12 years ago I was diagnosed with myopic degeneration in both eyes resulting in scarring on the macula and bleeding. I fortunately am in the great care of an east coast eye speciality hospital. I have to give credit to the wonderful physicians who have treated me over the years for saving my eyesight. Although, I do not have perfect 20/20 vision even with correction and have had double cataract surgery as well, I can function well in my ADLs and work full time. I am extremely grateful for all of this. I read the AMD Updates regularly and it has provided me with excellent information that helps me to have meaningful conversations with my physicians. It keeps me up to date on the latest vision research and provides me with resources in which I benefit. I have recommended this newsletter to family and friends who also have to cope with vision disorders. Thank you.
Discovery Eye Foundation brought me a great deal of knowledge at a time of great fear for my future well being. The knowledge was an excellent pacifier for those fears, since understanding relieves the apprehension of ignorance. They have, and continue to this day, to provide a great deal of continuing knowledge concerning my condition, which is keratoconus.
I was diagnosed with wet AMD several years ago. In researching this problem I came across the Discovery Eye Foundation site and it has been a big help to me ever since. Good information, response to E-mails and questions, personal attention when needed. I have recommended the site to several people who also suffer from AMD. Thank you!
Discovery Eye Foundation has helped me in many ways since I was diagnosed with AMD. In a time of great fear, it gave me comfort. I was supplied with the latest research along with the available aids & nutrition to help in my fight against this disabling disease. I am very appreciative for this organization.
The charity has provided a newsletter which always I look forward to receiving. They keep the world of those who suffer from this condition updated on possible treatment options. They post details about research and have a fantastic support and awareness function. Great company, made a difference in my life.
After receiving my yearly reminder card from my Ophthalmologist's office, I made an appointment and went in for my eye exam. During the exam I was unable to see the chart from my left eye due to a large black area. He immediately had me go to a specialist to confirm his concerns and I was told that I had Wet Macular Degeneration. After receiving some informational materials from my doctor, I went home and immediately look for more information on the internet. I found AMD.org, was impressed my the information that was available to me and registered to receive their newsletter. It has been important and helpful to me to have a better understanding of Wet Macular Degeneration.
I was diagnosed with keratoconus thirty years ago. As a result my eyesight problems have gradually worsened over the years, and despite ongoing development of new rigid contact lens, my eyes have suffered repeated corneal scratches and injuries, to the point where cornea transplants seemed inevitable. The problem is sufficiently unusual and rare that even my wife did not have any real understanding of KC. Fortunately, my corneal specialists are on the leading edge of medical advances and after decades of trying new lenses, my latest scleral lenses have been injury free, and I learned about NKCF from their office. Since then, my wife and I attended a half-day program in Chicago presented by NKCF for patients and family members. One of the featured speakers was one of my doctors. Everyone who spoke helped my wife to better understand my condition, and increased my knowledge and perspective on my own condition. Patients attended from three or four states, some of spent hours travelling to the program. NKCF also has an email list of patients and professionals exchanging information to help each other. Recently, from there I learned of a new keratoconus lens available in Europe and patients' experience using it. This is another encouraging benefit of NKCF. Now I have reasons to hope that I will never need corneal transplants. NKCF has helped me improve my quality of life and hope for future years of stable and possibly improved vision. Too many people take eyesight for granted.
Being diagnosed with macular degeneration is both frightening and overwhelming. A source of current information relating to this condition is extremely important to someone trying to cope with the potential for loss of vision. Discovery Eye Foundation has become that trusted source of information for me. I sincerely appreciate the frequent updates from Discovery Eye Foundation that are conveniently delivered via email. They do an excellent job of presenting the latest information on research studies and therapies in an easy to understand format.
I can't even remember where I learned about the AMD website, but I think it was in a magazine or from another website. I went to check it out because my mother and my oldest sister both have MD. I have really gotten a lot of information from their articles and they even sent me a chart to keep on my refrigerator to check my eyes with and that gives me security in knowing that I will catch it early if I develop it also. I am watching their research now to decide what the best vitamin will turn out to be. It's great to have so much information in one place that is keeping up with the latest information. Maybe I will be lucky and not have to go through what my mother and sister are doing. I know that they are very helpful now, and with any luck they will be life-changing for me and my other siblings and our children and grandchildren.
When I was diagnosed with Wet AMD in June 2011, I was crushed and afraid. AMD.org was a huge help in assisting me in understanding what I was going through, what to expect, and how to help my eyes retain the health they did have. I also found that I'm not alone, there are many others like me who also benefit from AMD.org.
With this organization's newsletter I found a new hybrid contact that has essentially granted me 20/20 vision. I had no idea that I was seeing so poorly with glasses until I was fitted with this medical device. It actually won medical device of the year 2009 against even prosthetic devices. It's a miracle!
When my mother was diagnosed with Macular Degeneration we were both very frightened. We knew so little about the disease and what she was going to face. The Discovery Eye Foundation has provided a wealth of information and support over the years. Mom can't read information on a computer anymore so I receive the monthly newsletter and read it faithfully before printing it off in large font for mom. It's given her direction on what questions to ask her eye doctor, warned her about a prescription that was tainted and advised her what to do to help. It's informed me about lifestyle changes my daughter and I can do to help decrease the odds of us getting the disease. Thank you.
I live in Ontario, Canada & have received the emails from Discovery Eye Foundation since I was diagnosed with ARMD & have been encouraged by the research information & general eye care information I have received. Not only do I have the benefit of first class research information but I share with others as I am a volunteer with our local CNIB (Canadian National Institute for the Blind). Thank you for this service. Meg Slater.
The ongoing up-to-date online information provided by Discovery Eye Foundation has greatly assisted me as a patient treated for AMD. Additionally, I have helped to disseminate the findings of research reports as well as the importance of early detection. Therefore, the organization has made it possible to impact a wider group of high-risk individuals.
The charity that I'm writing to you about is the National Keratoconus Foundation. My name is Dan Rinaldi and I never realized that there was a couple of procedures out there to help me, until I came across this website. I'm a Providence, RI firefighter and I'm the type of person that you'd have on a website as far as testimonials, because I've had a lot of exposure as a firefighter and it would give any non-profit audience of over a million career and volunteer firefighters around the country. I'm also an amateur competitive cook. I was voted the best firefighter cook in America from 2002-2004 by Tabasco and the Food Network. I've been on the Food Network several times as well as: The Rossie O'Donnell Show, The Tonight Show with Jay Leno, Live with Regis&Kelly and the Today Show. I've also received 13 department medals with the Providence Fire Department, one of the busiest fire departments in the country, for rescues that I've made. I was also a member of FEMA's Urban Search And Rescue Task Force out of this region(MATF-1), but I had to resign due to my condition. We could be deployed anywhere in the world at any time and having an eye disability wasn't safe for me or the rest of the task force. It's kind of like having a Navy SEAL with one good eye, it just doesn't happen. I'm only 43 and I didn't want to retire from the job that I've committed my life to. That's where this website came in and I've had it's links put on a bunch of firefighter websites. I've gone through with the surgery for my condition since seeing and education myself with this site. I'm happy to say that I had my one month follow up visit this week and my vision went from continually deterioration to not only being stabilized, but actually reversing. My vision started out at 20/400 and I'm now at 20/100 and I still have eleven months of healing with continued improvements expected. I put a couple of website links below so that you can see the real impact this site has had on me as well as the people that I will continue to save for the next 18 years on the fire department. http://www.wpri.com/dpp/on_air/street_stories/street-stories-providence-firefighter-keratoconus-dan-rinaldi-recipe-winner http://www.wpri.com/dpp/on_air/street_stories/street-stories-update-recipe-for-cure-for-firefighter
Our son was diagnosed with keratoconus in June of 2011. We had never even heard of this condition before. The National Keratoconus Foundation was an essential tool in learning about this disease, researching options for our son, and providing him with the best possible care.
My husband has an eye disease that is not common so we have a hard time finding information or specialists. Through DEF we have received email newsletters about conferences near us and where we can find specialists. It has been wonderful. The newsletters also include tips on daily life with a particular disease which we really like.
I was diagnosed with keratoconus in my late 20's after visiting numerous optometrist who informed me I had severe astigmatism. It was only after visiting an opthamologist who diagnosed me with keratoconus. Since then I have been wearing RGP lenses and have had pretty good success. My plan is to have Intacs and the vitamin treatment to strengthen my cornea. The NKCF has been invaluable with information in regards to my condition; I feel I am not alone and this is a comfort in itself. Thank you.
The Discovery Eye Foundation has been a great resource for learning more about a condition I have - Macular Degeneration. My daughter signed me up to attend a Vision Seminar conducted at the UC Irvine Campus. It was very informative, and we obtained additional valuable resources that assists me to see things better. I am very greatful for the extensive research they share with all of us, and I enjoy receiving their newsletter keeping me abreast of new information they have discovered in their research.
The Discovery Eye Foundation and provided up to date information on Macular Degeneration. By subscribing to the emails they distribute regularly I have been able to build hope that preventative progression of the disease may be in the near future. With my being at risk for both Glaucoma and having dry MD in both eyes I depend on these updates and health advisories to maintain and healthy lifestyle and preserve my vision as long as possible.
The Discovery Eye Foundation has helped me to understand what Keratoconus is and how to deal with the affects on my vision. The seminars are a great way to find out about new research and procedures that are available. They will also help you find trial programs with support groups. The information is always true and reliable. You can trust this foundation.
Discovery Eye Foundation has been a reliable source for information about my disease, the things I can do as part of the treatment to address the problem and, the latest medical research in treatment advancements.
I don't know of any foundation that gives such great support, assistance and accurate information, and does it so kindly and so promptly. I am an AMD patient and the DISCOVERY EYE FOUNDATION has my unconditional gratitude.They are my prime source of comfort, advice and up to date information. I do thank them from the bottom of my heart. I hope that they will always get all the support that they need and deserve, and be able to continue to assist the visually handicapped in their very own wonderful way.
My wife has macular degeneration and she really appreciates the symposiums that are sponsored by the Discovery Eye Foundation. She has learned much from them and finds them very useful.
I have been receiving useful info from DEF for many years now. They review recent research on treatment and provide helpful general advice for individuals and family members trying to live comfortably with serious vision problems. They have also responded to individual requests for information and/or help in a timely and supportive manner.
In a world where we are constantly exposed to large foundations with a lot of support and active members in the community focused toward the foundation the nkcf continues to shine through. This non profit exists to educate and move forward with innovative ways to prevent, cure and help those with the condition. When I was diagnosed with the condition this website was my first educational exposure. Although it is such a rare disease the foundation thrives to change the rare case and often the overlooked patient. For its size the foundation has gathered a large population of followers, but would be a perfect candidate for an award - it has been life changing for me. This is true especially because since it is so rare I beleieved that there was no one out there who could understand the struggle with the condition. Nkcf helped to connect me with others and has been so inspiring to me personally that I have set up a sponsorship with the foundation to raise awareness in my community and accept donations as a sponsorted triathlete of nkcf. I have pledged to donate $1500 and when I participate in ironman rhode island (a 70 mile triathlon) I will know that I'm not running for myself, I'm running for everyone with the experience of a keratoconus diagnosis... and that's all because of this foundation! Thank you nkcf!
I have found the Voundation to be an invaluable ally in my quest to provide information to patients dealing with KC. I regularly refer them to the website as THE most up-to-date source of information available. I have been very grateful for the referrals I have received as well. Randy J. Esptein, MD
Tell your story here and help others understand this charity When I was diagnosed with Keratoconus a year ago, I researched and found this great organization that gave me all the support and information I needed to continue to live a normal life. They continue to give as much information as they can to continue my understanding of the disease including new research methods, tips, and ideas of how to cope with this disease.
When I was first diagnosed with Keratoconus 14 years ago, I've never heard of the disease. My eye doctor gave me the NKCF booklet and I logged onto their website. The newsletters have been very informative and the KC link has served as a helpful resource—many of my questions were answered by people who have experienced my situation. In fact, when I had my transplant 2 years ago, I was able to compare notes with someone who's surgery was days before. We created our own little support group... something that wouldn't have happened without the KC link.
Since then I have had the opportunity to interact with many people seeking support and offering support to those with keratoconus. I have had the opportunity to learn and educate; to build relationships and to publish. Much of this would not have been possible without the broad base and input that the worldwide fellowship sponsored by the NKCF provided. The power of the NKCF is multiplied by an inestimable factor when the number of other support sites quoting and linkiing the NKCF site is appreciated.
When I was diagnosed with Keratoconus in 1998, I never heard of keratoconus before and had no idea what it was. Searching in the internet I found the NKCF. They not only answered my questions and concerns, but with the letter they send to my insurance I was able to obtain approval for payments of the office visits, treatment and contact lenses.Their newsletters keep me inform of the newest treatments and technological advances to treat keratoconus. which in turn i discussed with my doctor. The last contact lenses I made are using one of those cushion lenses and they are much more comfortable in addition to reduced the scars I had on one of my eyes while improving my vision.
When first diagnosed with keratoconus in 2003, I was scared and didn't know where to turn. Would my work possibilities dwindle? Could I drive at night? Would I lose my sight? NKCF provided comfort, resources, and hope. The newsletters and message boards provide everything from moral support to practical support (the best sunglasses for KC patients, ways to explain KC to others, travel for RGP lens wearers). I found my first KC specialist through NKCF and when my health coverage changed, they were there to help me locate a replacement. When I needed a letter that explained KC to my insurer, they were there. NKCF is professional and dedicated to our little-known diseases. I can't recommend them too highly.
I am 23, and was diagnosed at age 17 with Keratoconus, a degenerative disease of the cornea which causes poor vision and makes vision correction with glasses and contacts very difficult. It is the number one reason people have cornea transplants in the United States. At the time when I was diagnosed the optometrist knew very little about my disease (occurs in 1 out of 2,000 people) and made me scared. The first thing I did was go home and look up the disease and I found the website for this organization. They were and continue to be the best resource for people like myself looking for resources, information, and support. This past weekend, (June 2010) I attended a conference hosted by Discovery Eye and National Keratoconus Foundation. The conference was free to attend and had many of the top doctors in the world, speak. After six years of living in fear that I would not have option as my disease gets worse, I am finally at peace. I now know what my options are and what is currently in the research stage. I was also able to meet (for the first time) other people who have KC, which was amazing. Something else worth noting is the email discussion forum hosted via this organization. Patients are able to communicate with other people who have KC as they search for answers. This provides a great sense of community and is an amazing resource. I cannot express how thankful I am for this service alone. I highly recommend the National Keratoconus Foundation to all. *Please forgive any errors in this review. It is not easy for me to see the computer screen clearly.
I have had keratoconos for nearly 50 years and this organization has been a godsend for information, counsel and direction as my deseace has progressed. After a corneal transplant I found their literature to be the most complete and easiest to access and use that existed. Their research into a range of eye issues seems to be at the forefront of progress for these conditions and there ratio of operating expenses to proper use of their funds seems to be very high.