Director of National Keratoconus Foundation - University of California, Irvine

Founded in 1965, UC Irvine is a member of the prestigious Association of American Universities and is ranked among the nation’s top 10 public universities by U.S. News & World Report. The campus has produced five Nobel laureates and is known for its academic achievement, premier research, innovation and anteater mascot. Led by Chancellor Howard Gillman, UC Irvine has more than 36,000 students and offers 224 degree programs. It’s located in one of the world’s safest and most economically vibrant communities and is Orange County’s second-largest employer, contributing $7 billion annually to the local economy and $8 billion statewide.

To learn more about UC Irvine, visit www.uci.edu.

The National Keratoconus Foundation (NKCF) was formed in 1986 by the Pynoos and Neely families to provide information and education about Keratoconus (KC). In 2016 the program was transferred to UC Irvine's Department of Ophthalmology to broaden its reach, promote eye research, advocate, and raise 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.
Orange County is home to the highest concentration of vision technology companies in the world. Working with them has been a cornerstone of the institute since UCI's Department of Ophthalmology was founded in 1975. At the institute and the Department of Ophthalmology, we have assembled a peerless team of scientists, engineers, and clinical faculty physicians. This internationally recognized group includes geneticists, infectious disease specialists and developers of sight preserving technologies for macular degeneration, diabetic retinopathy, glaucoma, corneal disease, and cataracts. Their work has put the university in the top echelon of institutions receiving National Institutes of Health grants for vision research.
Our clinical faculty physicians and basic science researchers are pioneers in developing the most advanced vision treatment and techniques used today. They continue to play a vital role in the development of technologies that make a difference in people's lives. From basic science discoveries that create the foundation of the next generation of product developments to the clinical studies that optimize new therapies, the institute's faculty is committed to being an active collaborator with medical device and pharmaceutical companies, inventors, and entrepreneurs. Being at the forefront in eye research makes the Gavin Herbert Eye Institute a magnet for the best and the brightest residents and fellows, the next generation of physicians, surgeons, and scientists. It equips us for one ultimate purpose: to keep UCI and Orange County in the vanguard, providing unparalleled patient care.

The National Keratoconus Foundation (NKCF) functions as a unit within the department of ophthalmology and has its own unique strategic plan, advisory board, and required roles and responsibilities. The organization is the primary source of information for many keratoconus patients and their families and works with practitioners to interpret and disseminate current news, clinical trial results and industry reports for the public. This position will oversee administrative and health education programs promoting eye health related to the cornea disease keratoconus (KC) within the Department of Ophthalmology at University, California, Irvine. Under the direction of Department Chair, Department Administrator of Ophthalmology and Advisory Board, this administrative and health education professional will lead specific health education development and outreach programs, coordinate with UCI Health Advancement to assist to secure significant philanthropic support for keratoconus and related eye health conditions, and provide administrative oversight and carry out daily operations. The scope of responsibilities includes:
• The incumbent will regularly read and interpret keratoconus-related scientific articles, clinical trial results, and other news reports, and summarize the findings in a manner than can be easily understood and appreciated by the general public. (Sources might include pubmed.gov, Google Scholar and news magazines like Ophthalmology Times and Ocular Surgery News). This information forms the foundation for articles published in the newsletter, NKCF Update published 3x/yr and used as current ‘news’ uploaded to the website to keep content fresh and is also used as content for social media posts.
• This position maintains a vital database (MyEmma) and information system to raise awareness, educate, support, and promote advocacy for those with keratoconus. The database can create ‘groups’ which can be used for sorting and specialized contacting. Some existing groups include US-based individuals, OD Educators, Referral List doctors, Down syndrome families, Webinar attendees, and Current or Past donors. The database is the organization’s critical resource and must be maintained. o Patients and members of the public who request material or information using a form on the NKCF.org website is added to the NKCF database and receive invitations for future events. These names should be downloaded from NKCF.org website every 2-3 weeks and ‘new patient packets’ should be mailed to them. o Providers (ODs and MDs) added to the Specialist Lists are also added to the database.
• Position will take the lead in the organization and implementation of special events related to World KC Day, including promoting November 10 as a day of education and awareness for patients, providers, and industry. If possible, NKCF should create a special event or competition to engage the public. Past events have included a world map and people were invited to ‘pin’ their location, a film festival, and photo contest. UCI Advancement may use WKCD as a fundraising opportunity for a direct mail appeal.
• Attend relevant specialty and Academy meetings where representation by NKCF is valuable. At select meetings NKCF hosts ‘Roundtable’ events where current topics of interest to practitioners or researchers may be discussed. Roundtables have been held at recent American Academy of Optometry, ARVO, and ASCRS annual meetings. High profile experts should be recruited as panelists as this may increase interest and attendance. These events are organized as an affiliate event through the host organization (e.g., AAO). NKCF will be assigned space in a convention-affiliated hotel and negotiates meeting room and services with the hotel.
• This position will handle special projects/assignments involving direct interaction with UCI staff at all levels, external volunteers, event attendees, all donors, and stakeholders. Planning, implementing, and evaluating health education programs to prevent illness and promote eye health and keratoconus. Family Symposia may be jointly scheduled with other groups. (Previous partners include Kellogg Eye Center at U. Michigan and Univ. Houston College of Optometry.) These half-day sessions focus on education and the opportunity to meet other affected families. NKCF’s role will be putting the agenda together, marketing, and registering attendees.
• Manage the Specialist Referral database by reviewing credentials of ophthalmologist and optometrists who ask to be added to the List (through an on-line request on NKCF.org website). After information has been verified, add the names and practice information to the website and send a welcome packet to the physician.
• Respond to phone calls and messages left on the NKCF ‘warm-line’ (800-521-2524) or email messages from patients requesting information. Phone rings in NKCF office.
• Identify KC patients whose stories may be an inspiration to others. Work with these patients to feature their personal journey with KC on the website, podcast or in newsletters. Previous examples are artists, musicians, professional baseball player and NASCAR driver.
• Review, revise and update existing written materials as needed. Create new materials when appropriate. UCI Marketing Services is helpful in lay-out and printing of brochures and booklets.
• Organize regular (bi-monthly) public webinars by selecting topics, arranging for speakers, and moderator. Promote the topic and speaker on NKCF.org Website and send invitations and reminders to names in the database. Webinars are hosted on the platform, GoTo.com. During the episode, curate incoming questions and comments from viewers, and pass them on to the moderator. Upload recording afterward to the NKCF@UCI YouTube Channel. Write a summary or highlights of the presentation to include as ‘news’ on website and a story in next newsletter encouraging others to watch the recording.
• Coordinate production of Clearly KC podcast episodes with host (Dr. Melissa Barnett at UC Davis) recorded at the convenience of guests and host. After the episode, edit the audio file, add intro music and upload the podcast for the public. Social media should also promote new episodes.
• Incumbent may be asked to participate in panels, or present at scientific meetings as an expert in patient perspectives of those with KC. Reflecting on concerns raised during phone calls and emails received, as well as the current literature, the purpose and mission of NKCF can be shared in these conferences by the program spokesperson.
• Monitor and evaluate program budgets for NKCF.
• Perform related duties as assigned/necessary.
The main goal of this position is to raise awareness, educate, support and advocate by implementing and expanding the development of education programs related to keratoconus. Communicates with UCI Health Advancement who will help lead fundraising activities. Management of educational outreach programs, events, and activities; Develops unique programs designed to raise awareness, educate, support and promote advocacy for the mission of the foundation; Provides basic analysis of program trends and results; Assists in developing and disseminating materials; Maintains database of foundation contacts; Coordinates work independently and in collaboration with UCI employees, external stakeholders, and other organizations to implement and expand reach of programs for the foundation.

Required:

• Ability to read and comprehend scientific articles and clinical trial reports, and to translate these concepts into writing that can be easily understood by patients and the public
• Working knowledge of health education marketing concepts, principles, procedures, and techniques.
• Working knowledge of the location, its vision, mission, goals, objectives, achievements, and infrastructure.
• Working knowledge of applicable UCI and UCI Health relates rules and policies.
• Good written and interpersonal communication skills to establish and maintain good working relationships throughout the organization and with outside constituencies.
• Good organizational, analytical and critical thinking skills.
• Confident and polished public speaker
• Skills in maintaining confidentiality
• Bachelor's degree in related area and / or equivalent experience / training
• Required to drive on occasion in order to perform the routine or essential job responsibilities for the position. Must possess a valid California driver license.
• Experience writing in a clear, precise, professional manner.

Special Conditions:

• Flexibility to work some nights or weekends for meetings/events.
• Travel may be required.

Total Compensation

In addition to the salary range listed below, we offer a wealth of benefits to make working at UCI even more rewarding. These benefits may include medical insurance, sick and vacation time, retirement savings plans, and access to a number of discounts and perks. Please utilize the links listed here to learn more about our compensation practices and benefits.

Conditions of Employment:

The University of California, Irvine (UCI) seeks to provide a safe and healthy environment for the entire UCI community. As part of this commitment, all applicants who accept an offer of employment must comply with the following conditions of employment:

• Background Check and Live Scan
• Legal Right to work in the United States
• Vaccination Policies
• Smoking and Tobacco Policy
• Drug Free Environment

The following additional conditions may apply, some of which are dependent upon business unit or job specific requirements.

• California Child Abuse and Neglect Reporting Act
• E-Verify
• Pre-Placement Health Evaluation

Details of each policy may be reviewed by visiting the following page - https://hr.uci.edu/new-hire/conditions-of-employment.php

Closing Statement:

The University of California, Irvine is an Equal Opportunity/Affirmative Action Employer. All qualified applicants will receive consideration for employment without regard to race, color, religion, sex, sexual orientation, gender identity, national origin, disability, age or protected veteran status.

For the University of California’s Affirmative Action Policy please visit: https://policy.ucop.edu/doc/4010393/PPSM-20.

For the University of California’s Anti-Discrimination Policy, please visit: https://policy.ucop.edu/doc/1001004/Anti-Discrimination.

We are committed to attracting and retaining a diverse workforce along with honoring unique experiences, perspectives, and identities. Together, our community strives to create and maintain working and learning environments that are inclusive, equitable, and welcoming.
UCI provides reasonable accommodations for applicants with disabilities upon request. For more information, please contact Human Resources at (949) 824-0500 or eec@uci.edu.