In the 1960s, after Jon Pynoos, a college student at Harvard was diagnosed with keratoconus, his parents took an interest in the disease that no one had heard of and no one could pronounce.
They placed a small notice in the Los Angeles Times inviting anyone with an interest in keratoconus to join them at a meeting they organized at a local hotel. They were amazed when between 60 and 80 people arrived for the meeting. Most had never met another person with KC.
That was the start of the Discovery Fund for Eye Research (later the Discovery Eye Foundation). The mission was to promote and support eye research for vision disorders like KC. Dr. Tony Nesburn, MD, was recruited to serve as the medical director of the Fund. In 1986, the Pynoos family (pictured right, Rita & Maury Pynoos), along with Jane and Norm Neely, patients of Dr. Nesburn and another family affected by keratoconus, created the National Keratoconus Foundation.
Distinct from the Discovery Fund, NKCF was envisioned as a patient-focused organization, helping those with KC better understand and cope with the condition. The organization became an independent 501(c)(3) nonprofit in 1993 and Morry Pynoos, Jon’s father, became the first president of the Board of Directors.
With a grant from Bausch + Lomb, NKCF published “What is Keratoconus? A Reference Guide for Patients and Their Families” which has had several editions and is still requested on a daily basis by patients in the U.S. and throughout the world. The book was translated into Spanish in 1996.
Cathy Warren, RN (pictured left), was hired as executive director in 1995 and served in that position for twenty years. Under her leadership, NKCF developed several programs that brought the KC community closer, educated doctors, and increased public awareness. In 1995, NKCF launched the first keratoconus-specific website, giving patients, caregivers and professionals a source for unbiased information. She launched the physician referral service, identifying ophthalmologists and optometrists who have expertise in caring for KC patients. KC-Link, a message board developed at University of California-Davis, was taken over by NKCF in 2000 and continues today with as an active on-line community with more than 3,500 members. The organization printed its first newsletter and sent it to 600 friends in 1995. As the mailing list grew, and printing and postage costs increased, the format changed. Today, electronic versions of NKCF Updates are sent to more than 20,000 members worldwide.
In 2006, NKCF gave up its independent nonprofit status and re-joined the Discovery Eye Foundation. Board members continued to oversee both the research support envisioned by DEF and the patient-based programs of NKCF. In 2015, the DEF Board voted to transfer NKCF to the University of California-Irvine as part of a $1 million gift by DEF to the Gavin Herbert Eye Institute.
The relocation of the office took place in 2016. Activities such as the patient referral service, website, message board, and e-Update continue as part of Gavin Herbert Eye Institute’s community outreach. The move has resulted in more resources available to NKCF, and the opportunity to draw from expertise available at an academic center.
And, what of Jon Pynoos, the young college student at the center of the story? He is now Dr. Pynoos, a professor of gerontology at the University of Southern California. He is still an active member of NKCF, and sits on a governing board that oversees the activities of NKCF as part of the Gavin Herbert Eye Institute.