Oops! You must enter a search term greater than 3 characters.

Invite reviews

Invite friends and colleagues to share their experiences with this nonprofit
78 Reviews
1234.910265
Write A Review
October 31, 2013
2 people found this review helpful

more

October 31, 2013
2 people found this review helpful

I have been a member since 2003. When I realized I needed to have DSEK transplants, read everything I could find, and learned so much from this site.. I wrote abut my surgery with Dr. Price when it was fairly new and hoped i could encourage others to utilize his services... He is now one of the EXPERTS in the field.. My surgeries took place in 2004 and 2005 and am happy to report that my eyesight is great and am finally "fuchs free"... I know so many others who have gained so much information from this site and highly recommend it to others with this disease.. There is a cure available!

More feedback...

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

October 31, 2013
1 person found this review helpful

more


1 previous review
June 6, 2011

Without a doubt, this organization provides much need factual and medical journal-based education and information about Fuchs Dystrophy, a rather rare disorder causing dystrophy of the cornea. This n... more

October 31, 2013
1 person found this review helpful

This is a wonderful volunteer organization which spreads facts and information about a rather rare disease whose treatment is constantly advancing. To keep up to date, and to face the onset of Fuchs' Dystrophy, those who are suddenly diagnosed have a place to receive individual attention while getting the most current information on treatments. So many physicians seem to be "behind the times" and the CDF is always at the cutting edge of accurate info.

Ways to make it better...

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

Find more people who need the info, and get more contributions to do same.

More feedback...

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

June 6, 2011
1 person found this review helpful

Without a doubt, this organization provides much need factual and medical journal-based education and information about Fuchs Dystrophy, a rather rare disorder causing dystrophy of the cornea.

This non-profit charity operates on a shoestring, with no paid staff, but a strong group of
long-time volunteers who have no other motives but to help confused and anxious patients learn more after their initial diagnoses of Fuchs Dystrophy and then help them through each phase of diagnosis and treatment.

When I was first diagnosed in the early 2000s, I immediately sought accurate info and was rewarded with the compassionate and honest info they provide.

As I neared my corneal surgey, I kept track of technology and efficacy-based advances in the state of the art. I received the best care with the most appropriate surgery based on the information they provided me and other members through the Foundation's web-based outreach.

Anyone with corneal dystrophy should contact the Foundation for the help it will provide in a sea of misinformation, many times caused by rapid medical technology changes. Thousands of corneal dystrophy patients have avoided highly traumatic and difficult penetrating keratoplasty surgery (complete corneal transplants) and instead received the restoration of good vision within days, not months or years, through selective and limited transplantation surgery performed by over a hundred specialized ophthalmologists.

Only this volunteer organization is dedicated to providing up-to-date medical facts, based on peer-reviewed journal information, for world-wide patients to make their own informed decisions about corneal dystrophy.

The Great!

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

My decisions for eye surgeries were based on the dissemination of their knowledge and the other sources provided by them, including seminars with the leading surgeons in the corneal dystrophy field, based on peer-reviewed medical journal articles and studies. This progressive disease deprived me of the ability to see street signs at night, read the daily newspaper under excellent lighting, and generally caused a severe deterioration of the quality of my life.

Ways to make it better...

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

Enlarge its funding base so that the knowledge the group dispenses can reach more affected individuals around the world.

More feedback...

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

How did you find this group?

Web searches on line.

What, if any, change in your life has this group encouraged?

It helped restore my vision with a newer medical procedure and provided essential information so my surgeries would be covered by my HMO. It is difficult to appreciate fully this organization's contribution unless you have had corneal dystrophy with your eyesight literally slipping away in a matter of months.

When was your last experience with this nonprofit?

2011

October 31, 2013
1 person found this review helpful

more

October 31, 2013
1 person found this review helpful

When my husband was diagnosed with Fuch's Corneal disease, I searched the Internet and found this group. It provided me with all of the answers that I had questions for, about this disease. It provide me with lists of doctors in my area that specialize in Fuchs. As a result, my husband had 2 corneal transplants, and this restored his vision.
It is all a result of the knowledge that I gained from the Corneal Dystrophy Foundation.
We'll be forever grateful for the work they do.
Sandra and Ed Martin

More feedback...

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

October 26, 2013
2 people found this review helpful

more

October 26, 2013
2 people found this review helpful

I found this organization and their Fuchs Friends Yahoo group this summer after being diagnosed with Fuchs. It has been a godsend -- a wonderful resource for information and support through the confusing journey of figuring out what I have and what I need to do about it. The yahoo group is monitored closely by staff and board members who share their extensive knowledge and experience, which helps to ensure that the information shared is current and correct. I especially appreciate their emphasis on making sure that the group is providing information but not giving medical advice. There are many questions that are answered with a gentle reminder that some issues really need to be addressed by a doctor in addition to getting feedback from the group. Also available are informational materials and a doctor list (free) and DVDs of past educational symposia for a fee. All in all, a terrific organization.

More feedback...

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

October 25, 2013
2 people found this review helpful

more

October 25, 2013
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.

Ways to make it better...

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.

More feedback...

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

October 22, 2013
1 person found this review helpful

more


1 previous review
May 23, 2010

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 hav... more

October 22, 2013
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.

Ways to make it better...

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

Encourage more local groups and local meetings.

More feedback...

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

May 23, 2010

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.

The Great!

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.

More feedback...

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

October 22, 2013
1 person found this review helpful

more

October 22, 2013
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.

Ways to make it better...

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

I have no changes to suggest

More feedback...

When was your last experience with this nonprofit?

2013

October 22, 2013
1 person found this review helpful

more

October 22, 2013
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.

More feedback...

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

October 22, 2013
1 person found this review helpful

more

October 22, 2013
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.

More feedback...

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

October 22, 2013
1 person found this review helpful

more

October 22, 2013
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.

More feedback...

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

Filter by reviewer role:

Support This Nonprofit

Help this nonprofit get more reviews

5 tips for getting reviews

5 tips for getting reviews...

  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
  3. Including a link in your email newsletter
  4. Putting a link in the signature of your email
    Putting a link on your facebook page and status updates
  5. Tweeting out a link to your twitter followers

3 hours of volunteer time for this nonprofit will...

If they lived near San Jose Ca could help us get the Quarterly Newsletter produced (folding, stapling, labeling).