National Keratoconus Foundation (NKCF)

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.

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.

• Successively campaigned for insurance coverage for corneal crosslinking procedure
• Leading the effort to raise awareness in the Down syndrome community where incidence of KC >30%
• Hosts bimonthly webinars with >6,000 live and YouTube views during 2020-2021
• Founded WORLD KC DAY November 10, 2015 and is now celebrated internationally to raise awareness of KC
• Partnered with local hospitals and cornea surgeons to establish KC information centers in Hyderabad, India (LV Prasad Eye Inst), Tokyo, Japan (Keio Univ), and Nairobi, Kenya (Lions SightFirst Eye Hospital)