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1 reviews

Review for The Corneal Dystrophy Foundation, San Jose, CA, USA

Rating: 5 stars  

Several years ago I was diagnosed with Fuchs' Corneal Dystrophy. I was unable to see defination and was bothered greatly by glare, being unable to distinguish people, signs, animals and having eye strain upon reading for any length of time. In 2002, I went to the internet and found the support group, Fuchs Friends. I learned all the latest advances in treatment and where the best specialists were located. I chose to travel a long distance to see Dr Mark Terry of Portland,OR who performed a new procedure, a partial transplant,(DLEK) cataract surgery and implant in 2004. In 2007, I had the DSAEK, cataract removal and implant in the other eye. Had it not been for this group, I would never have had the knowledge and courage to make this decision to seek the best resource possible. Even though I see perfectly without glasses and no longer have Fuchs', I have chosen to stay with the group and help others. The Corneal Dystrophy Foundation and Fuchs' Friends has more accurate information on this disease than can be found anywhere. If only all candidates for corneal surgery could find this group first, there would be less cases of botched surgeries by doctors who do not recognize or understand this rare disease..

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

numerous incidences where people find what they need to know in order to make informed decisions about their health care.

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

find a way to make it more accessible to those who need it and to be able to distribute more information to potential donors, people with Fuchs' and to doctors who need training in recognizing and treating this disease.

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

the great people I have met, the knowledge I have gained, and the people we have helped. The symposiums, all of which I have attended.

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

great, caring people.

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

educate a lot more doctors, donors and potential patients.

Ways to make it better...

I had more time to devote.

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

lack of funds to do the work that needs to be done. More Volunteers to share the load. Creating better, more informative symposiums each year.

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

I appreciate all the hard work that the volunteers and board members do to make this Foundation the best I have seen.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?


Role:  Volunteer & I monitor the Fuchs Friends Support Group, serve as Secretary to the Corneal Dystrophy Foundation Board.