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lilianw

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DISCOVERY EYE FOUNDATION
September 8, 2013

In the early days of my KC diagnosis, before the KC stabilized, the regular NKCF newsletters/forum provided much needed information and support. Discovery Eye Foundation/NKCF provide a valuable and much need resource for a disease that does not get as much visibility as other more obvious and prevalent conditions. KUDOS!!!

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

MY ROLE:
Client Served

DISCOVERY EYE FOUNDATION
June 29, 2010

Hi, My name is Lilian and was diagnosed with Keratoconus at 22 years of age. For any sufferers of KC and their families, it can be a rather trying experience. It's been about 10 years since I found NKCF while browsing the web for information about KC. I registered for the forum and received great support and feedback from participants. A recent relocation to a new city left me without a clue about finding a specialist. The efficient and easy referral service offered by NKCF pointed me into the direction to some of the best, most friendly and professional, MD and Optometrist (at a University Hospital in Jackson, MS) who fitted me with perfectly fitting Rigid Gas Permeable lens on the first try. I am so appreciative of the tireless efforts of forum and referral coordinator C. Warren. We are lucky to have her's and NKCF's 100% commitment to the holistic care, treatment and research of KC. Kudos to NKCF!

The Great!

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

Excellent organization deserving to maximum support for Keratoconus an non-obvious eye disease for which sufferers require very specific assistance.

Ways to make it better...

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

Only more growth, more assistance, a greater web presence, more international coverage and public enlightenment about this condition and progress in research.

More feedback

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

Daily web forum digest Comprehensive website information Great insurance reimbursement letter

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

Excellent!! 5 stars!!

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

Build a dedicated state of the art facility and international network of providers and suffers and optometrist. Have a advocacy or even its own insurance coverage for a medical condition for which medical insurers refuse to cover.

Ways to make it better...

NKCF on facebook International perspectives Chronology of "famous" or prominent persons living with KC

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

Funding Exposure Access to greater number of KC suffers for more data on KC

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

It is possible to have a full life with KC thanks to specialists and experienced optometrists.

How frequently have you been involved with the organization?

About every week

When was your last experience with this nonprofit?

2010

MY ROLE:
Client Served & Excellent Referral Service and Web Forum.