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69 Reviews
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October 1, 2010

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October 1, 2010

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.

The Great!

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

Yes, a number of times in the last 10+ years.

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

frequent and helpful info received.

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

foster more important research.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 29, 2010

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June 29, 2010

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.

The Great!

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

The advice given to me in care of my eyes.

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How frequently have you been involved with the organization?

One time

When was your last experience with this nonprofit?

2010

June 29, 2010

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June 29, 2010

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.

The Great!

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

the wealth of information I have received through the KC link and newsletters.

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How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

June 28, 2010

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June 28, 2010

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.

The Great!

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

--Specialized information to help me in my daily life --Connections to other keratoconus patients throughout the world --Access to up-to-date information from leading physicians and researchers --Help identifying physicians and contact lens fitters

More feedback...

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

access to the specialized resources that have a tangible effect on my life and ability to manage my eye disease.

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

friendly, professional, and clearly cared about their work and the patients it served.

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

organize much-needed seminars and groups across the country, help fund critical research projects, expand its educational offerings, start a speakers' bureau, and create materials to help family members, employers, etc. understand corneal diseases.

How frequently have you been involved with the organization?

About every six months

When was your last experience with this nonprofit?

2010

June 28, 2010

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June 28, 2010

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.

The Great!

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

+The newsletter/website (Excellent resource) +Orange County Eye Symposium (I received more information about my disease in four hours than in YEARS of research online, and talking with doctors.) +Email discussion forum.

Ways to make it better...

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

I would donate more money to this organization so that they can host more events and help fun more research. Although I have KC so I am biased. :)

More feedback...

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

the Orange County Eye Symposium.

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

very knowledgeable, friendly, and helpful.

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

make me cry! Well this sentence almost did. The organization could fun more research, provide more information to people suffering from this disease, and help people afford access to the VERY expensive treatments for KC.

Ways to make it better...

they could afford to host more events, help fund research. This is all due to lack of resources though, not their end.

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

the fact that very people know about Keratoconus and even if they do people have a difficult time understanding how difficult it can make life.

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

I am so thankful that I found this organization.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

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  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
  2. Putting a link on your Web site
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Help with administrative tasks, computer entry and events. Volunteer