About Us

THIRTY FIVE YEARS OF INFLUENCE

In 1986, the Pynoos and Neely families, two Southern California families affected by keratoconus, placed a small advertisement in a Los Angeles newspaper seeking others interested in learning more about KC. The response was significant. They realized the demand for a support organization. NKCF was formed to provide information and education about this condition.

In 2006, NKCF became a part of the Discovery Eye Foundation, a nonprofit that supports eye research and patient education. The National Keratoconus Foundation hosted a message board promoting interactions among families affected by KC, and produced the booklet, What is Keratoconus? A Reference Guide for Patients and their Families, which was updated and revised over the years. The current version, Keratoconus Patient Guide was published in 2017. Like previous editions, the book has been sent, free of charge, to tens of thousands of individuals living in the US. Electronic copies are made available to internationals requesting information.

In 2016, Discovery Eye Foundation transferred the assets and program of NKCF to the Department of Ophthalmology at the University of California, Irvine. With the additional expertise available at an academic medical center, NKCF has been able to broaden its reach, promoting eye research, advocating, educating and raising awareness about the experience of living with keratoconus.

Today, NKCF is the world’s oldest and largest keratoconus-focused organization, with a database of more than 25,000 patients and care providers. NKCF regularly communicates with the public through webinars, newsletters and social media posts.

2016

NKCF becomes an outreach program of the Department of Ophthalmology at University of California, Irvine School of Medicine. In June, the FDA approves corneal crosslinking, a procedure that slows or halts the progression of keratoconus. The first international effort to raise awareness, World KC Day is held on November 10.

2017

NKCF partners with the Alliance for Eye and Vision Research to host the first Congressional Briefing on Keratoconus in Washington DC. Patients share their experiences of living with keratoconus and researchers give a view of the future of KC diagnosis and treatment to the nation’s legislators.

2018

NKCF printed a new brochure, Down Syndrome and Keratoconus, which have been placed in some of the DS clinics across the country as part of our awareness campaign. NKCF also participated in the Down Syndrome Congress, held in Dallas, TX. Nearly 4,000 families from across the country were in attendance.

2019

NKCF launches its bimonthly Evening Webinar series to supplement information found in the quarterly newsletter. Live talks on a variety of topics of interest to those impacted by keratoconus are taped and can be viewed on the NKCF.org website.

2020

NKCF takes its Referral List on line. Since the early days, patients have requested the names of eyecare professionals with expertise in treating KC. Visitors to the NKCF.org website can view names and practice information of more than 350 optometrists and ophthalmologists across the US with special training in caring for those with keratoconus.

2021

NKCF partners with Southern California College of Optometry at Marshall B. Ketchum University to provide a supplemental webinar series to further educate optometry students throughout the country how to diagnose and treat keratoconus.

2022

NKCF co-sponsored a new award, the Keratoconus Practitioner of the Year, with the Gas Permeable Lens Institute and NKCF Ambassador and Major League Baseball player Tommy Pham. Dr. Barry Eiden OD of Chicago was the first recipient of this award at the 2021 Global Specialty Lens Symposium (GSLS).
NKCF also hosted the first meeting of the Task Force on Down syndrome and Keratoconus. Dr. Ann Ostrovsky MD, of New York University leads this group. Members include pediatric optometrists and ophthalmologists, and cornea and contact lens specialists from across the US who have experience working with the DS community.

2023

NKCF launched a new podcast, Clearly KC, with Dr. Melissa Barnett OD. Clearly KC is for patients, family members, and medical professionals interested in learning more about KC, and can be listened to for free on any podcast app.

Now located within the Gavin Herbert Eye Institute at UC-Irvine, NKCF provides support and information to the keratoconus community.

We respond to on-line inquiries or to our toll-free telephone line, 1-800-521-2524.

10,000

Visitors

The number of people who have viewed our Evening Webinars live or on YouTube since 2019.

155

Nations

The number of countries, including the US, where subscribers to our newsletter, NKCF Update are located.