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78 Reviews
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October 31, 2013
3 people found this review helpful

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October 31, 2013
3 people found this review helpful

When I lost vision in one eye I was terrified and after a diagnosis of Fuchs Dystrophy I was scared and confused. Fortunately I found the Corneal Dystrophy Foundation online and that discovery changed my life. I read all I could from the vast assortment of information available as well as the questions and answers posted daily. I went into surgery with confidence in my doctor because i had chosen him from the postings of other patients. i felt totally prepared, knowing what to expect and had no surprises. I wrote about my experience online to perhaps help someone as I had been helped. The volunteers are wonderful, generous people who I am sure have helped thousands of people who have found themselves in a scary situation and they are there with reassurance and help.

Ways to make it better...

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

They do a great job.

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

October 31, 2013
1 person found this review helpful

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October 31, 2013
1 person found this review helpful

Being diagnosed with corneal dystrophy is the beginning of a venture into the unknown for many people, including me. For at least in my case, the ophthalmologist's diagnosis was just that, a diagnosis with no other information. I believe that the reasoning was that I didn't need to know any more because I was not at the time in acute need of surgery. I found The Corneal Dystrophy Foundation through internet search, and joined Fuchs' Friends, which has been a most informative and reassuring experience. I'm a firm believer in the adage that knowledge is power, and information is the most valuable tool we can possess. I commend all associated with the group for smoothing the road on what can be a complex journey.

Ways to make it better...

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

continue to exert an effort to make all feel welcome. I wish more doctors possessed more of the information available on this site. In my experience, doctors are wary when their patients share any knowledge they found online. There should be more awareness of the Foundation's credibility.

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When was your last experience with this nonprofit?

2012

October 23, 2013
1 person found this review helpful

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October 23, 2013
1 person found this review helpful

The fuchsfriends yahoo group is made possible by the Corneal Dystrophy Foundation. If you have Fuchs or have a family member or friend with Fuchs, membership in this support group is a must. I was diagnosed over 20 years ago and could find nothing at that time to educate me on this disease. Fortunately, I found the Corneal Dystrophy Foundation website and their Fuchs Friends support group about 7 years ago. There was a symposium held in my area shortly after that which I attended and learned a great deal about the partial transplants that were then being done. My corneal specialist knew nothing about these partial transplants and was only doing full thickness transplants. My vision quickly deteriorated in the last 2 years and, only because of Fuchs Friends, I knew what procedure I wanted and what doctor I wanted to do it. As of this month, I am Fuchs Free and have crystal clear 20/20 vision. This Foundation and support group provide invaluable support and information.

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Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

October 23, 2013
2 people found this review helpful

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October 23, 2013
2 people found this review helpful

I subscribe to a forum or Yahoo email group related to the Corneal Dystrophy Foundation and I believe that is also managed by by them. As a member of the email group I was able to learn a great deal and connect with others who were going through the same thing as I. If I had questions they were usually answered by someone in the group on a timely basis. I have had both of my eyes corrected now and am blessed because of that. Since I no longer have the problems I rarely have the need or time to stay involved, but do still receive the emails just to stay connected.

Ways to make it better...

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

None known.

More feedback...

Will you volunteer or donate to this organization?

Unsure

How much of an impact do you think this organization has?

A lot

When was your last experience with this nonprofit?

2010

October 22, 2013
1 person found this review helpful

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October 22, 2013
1 person found this review helpful

Wonderful group of caring and very knowledgeable people who have provided excellent information about Fuchs Dystrophy, including cutting edge transplant techniques and medical providers in various areas of the US. This knowledge has helped me and many others to locate and converse with corneal specialists to obtain the best care available for our relatively rare disease. I first joined this group in 2005 when diagnosed, and returned this year when I became symptomatic. Through this group I was able to locate and schedule transplant surgery with an outstanding specialist.

Ways to make it better...

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

Make Yahoo go back to the 'old' way of reading and searching group posts!

More feedback...

Will you volunteer or donate to this organization?

Definitely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

October 22, 2013
1 person found this review helpful

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October 22, 2013
1 person found this review helpful

They have so much knowledge and have helped so many in ways.

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Will you volunteer or donate to this organization?

Likely

How much of an impact do you think this organization has?

Life-changing

When was your last experience with this nonprofit?

2013

October 1, 2010
1 person found this review helpful

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October 1, 2010
1 person found this review helpful

The day I was diagnosed with Fuch's, after many weeks of uncertainty, I felt my world had turned upside down. I had never heard of this disease!I was going to go blind! The doctor had told me the news while sitting in the hallway! Matter of factly. With few details. I had to go to work right after that and just could not function. I turned to the internet to find more information and was lucky to discover Fuch's friends. They were an invaluable help in calming me down and getting me to understand the disease. Panic sets in when the doctor gives you bad news. In my case he might have been a great professor but not much of a humanitarian. FF put a friendly face to everything. Restored my peace of life and has been here all the way with instant replies to my questions, shared stories and access to an invaluable, current, website. I have made life long friends after meeting other members at 2 symposiums and keeping in touch through the internet. I can never thank them enough. Br in Calgary, Alberta, Canada

The Great!

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

Continued support.

Ways to make it better...

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

Have a symposium every year instead of every 2 years.

More feedback...

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

Continued support, timely information

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

Wow!

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

Totally finance symposiums, help with research.

Ways to make it better...

nothing

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

none

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

I heartfully thank every founder for their insight and hard work.

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2000

May 24, 2010
1 person found this review helpful

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May 24, 2010
1 person found this review helpful

I have Fuchs' Endothelial Corneal Dystrophy and was looking for more information about corneal problems. The website and the people posting to the accompanying support group both have excellent information. What I like best is that the information is presented clearly, excellent explanations in terms that I understand. Research is emphasized and postings are updated in a timely manner.

The Great!

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

in my understanding of my disease and in the medical options available to me. I am a better patient from the timely information posted and will be able to face my transplant with courage and a positive attitude rather than with fear and trembling.

Ways to make it better...

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

I'm not sure I would make any changes. I suppose it is unreasonable to expect a busy physician to be available to chat or to answer questions in real time via the website. But perhaps a retired ophthalmologist could be employed to answer user's questions.

More feedback...

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

The timely information and access to research in corneal dystrophies.

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

I have interfaced only with the website.

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

Provide funding for research into corneal diseases.

Ways to make it better...

Not sure; it was an excellent experience.

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

I am not informed of the challenges of this organizaiton.

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

Since I suffer from a corneal dystrophy, I feel that I am a much more informed patient because of contact with the Corneal Dystrophy Foundation. I will face my transplant with confidence and courage rather than with fear and trembling. ccccccccccccccccccc

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

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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

May 23, 2010
1 person found this review helpful

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May 23, 2010
1 person found this review helpful

The Fuchsfriends website was my life-line for several years. A week after my diagnosis of Fuchs'endothelial dystrophy I joined this support group, and was immediately invited to attend a symposium the very next day. I was living in Atlanta, Georgia at the time, and it turned out that the symposium was only a mile away from where I lived. I thought that it was very nice of them to allow me to attend on such short notice. I met the founders of the group, and learned a great deal. As my vision continued to worsen, I could always count on encouragement and information from Fuchsfriends. It was a member who told me about special glasses that I could put on my bifocals, which made it possible for me to continue to read music. I was consoled by other musicians in the group, who shared their experiences with me. After having a very unhappy experience with a local corneal specialist, I explained what happened to the group, and was encouraged to get a second opinion from Dr. Price in Indianapolis. Thanks to all the wonderful information that the group supplies, which included a DVD of a symposium that I could not attend. I already knew about the top doctors in this field, including Dr. Price. I made an appointment, and during the two month wait I corresponded with some of his patients who were members of this group so that I would know exactly what to expect during my appointment. I liked Dr. Price, and had very good outcomes from my transplant (DSEK) surgeries in July, 2008, and in April, 2009. If I had not found this support group I would have had a much more difficult road. Because of their information, help, and nurturing, I was able to get my vision back sooner rather than later, and am now back to the work that I could no longer do when I had the disease. Debbie Zufall

The Great!

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

Without Fuchsfriends I may have had to waste more years of my life before finding a doctor who would take my case.

More feedback...

How frequently have you been involved with the organization?

About every month

When was your last experience with this nonprofit?

2009

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  1. Sending an email to clients, volunteers, donors, board members, and other partners with a link to your profile page.
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If they lived near San Jose Ca could help us get the Quarterly Newsletter produced (folding, stapling, labeling).