VISIONS 2020 Speakers
The VISIONS Team is working hard to secure some of the world's best researchers and clinicians in the field of retinal diseases to speak at VISIONS 2020. As we secure them, we’ll post them to this page along with a brief bio on their experience, so check back often!
Keynote Speaker -- Closing Session
Bill Barkeley graduated from the University of Southern California in 1984 with a degree in Business Administration. Bill was Director, Sales and Marketing before retiring from a Fortune 500 company after 25 years with leadership positions in Seattle, San Francisco and Grand Rapids. Bill currently travels the world as a deaf-blind adventurer and public speaker/storyteller to share his life journey with progressive hearing and vision loss.
Bill is one of 15,000 – 20,000 people in the United States and 100,000 people in the world with Usher’s Syndrome. Usher’s Syndrome is disease that robs people of both their hearing and vision over time. Bill lost 85% of his hearing from birth and in his late teens/early 20’s began to experience night blindness and vision loss. Usher’s Syndrome is progressive and there are no known treatments or cures.
As a deaf-blind advocate, Bill is active in community service. He works with the Association of the Blind and Visually Impaired (A.B.V.I. – past president), Hearing Loss Association of America (local and national level), University of Michigan Metro Health (board chair), Foundation Fighting Blindness (local and national level) and No Barriers USA (board member).
In 2008, Bill completed a climb of Mount Kilimanjaro in Africa as a project on assistive technology for the deaf-blind. He has been featured on local, regional, national and international media such as Good Morning America, WOODTV 8, The Grand Rapids Press, National Public Radio (NPR), Faith Magazine; Hear The World, Hearing Loss Association of American (magazine) and Sierra Club Radio. A film documentary by Josh Levine, Walk Your Own Path – Bill Barkeley’s climb of Mount Kilimanjaro was released to the adventure film circuit. The climb was covered in Outside Magazine (July 2008).
Dr. Shannon Boye
Speaker - Opening Session: Mission Possible! What’s Next for Gene Therapy?
Dr. Shannon Boye is an assistant professor in the Department of Ophthalmology at the University of Florida. Her interest in gene therapy for inherited retinal disease began during her thesis studies and continued into her postdoctoral training with Dr. William Hauswirth. She currently focuses heavily on three areas of research. (1) Developing a treatment for GUCY2D Leber congenital amaurosis (LCA1) (2) Optimizing AAV vectors to target genes to photoreceptors following intravitreal injection and (3) Developing dual AAV vector platforms to treat ocular disease associated with mutations in large genes. Dr. Boye currently serves as Principal Investigator, Co-Principal Investigator or Co-Investigator on several federally and privately funded grants and is actively involved in the University of Florida’s teaching mission. She has authored numerous peer-reviewed manuscripts and textbook chapters, is a member of the NIH Early Career Reviewer (ECR) program and was recently awarded the ARVO Foundation/Merck Innovative Ophthalmology Research Award in Gene Therapy and Eye Disease.
Speaker -- Living Mindfully with Vision Loss
Martel Catalano is a nonprofit leader and meditation teacher helping individuals cope with health-related uncertainty. She is the co-founder and director of Beyond My Battle, a nonprofit helping people reduce the stress of rare disease, serious illness, and disability through mindfulness, awareness, and compassion. She is also the host of the Beyond My Battle Podcast. Martel lives with retinitis pigmentosa and resides in Upstate New York.
John R. Corneille, JD
Speaker -- Learn more about our Legacy Program
John Corneille, JD is the Director of Legacy Giving for the Foundation Fighting Blindness.
Dr. Jacque Duncan
Speaker - Participating in Natural History Studies and Clinical Trial
Dr. Jacque Duncan is an ophthalmologist at UCSF Medical Center who specializes in treating retina degenerations such as retinitis pigmentosa, which affects one in 3,500 people worldwide; and age-related macular degeneration, the leading cause of blindness in people over age 50 in the U.S. Both conditions run in families and currently have no cure. Her expertise includes the diagnosis and treatment of retinal diseases such as Usher syndrome, cone-rod dystrophy and Stargardt disease, a form of macular degeneration that develops in childhood, and the use of experimental techniques to slow or prevent these conditions.
In her research, she is studying treatments to preserve vision and to use devices to stimulate visual perception in patients. She has received research funding from the The US Food and Drug Administration Office of Orphan Product Development, the Foundation Fighting Blindness, Research to Prevent Blindness, the Lowy Medical Research Institute, the Giannini Foundation, the L.L. Hillblom Foundation, the Beckman Institute for Macular Research, Karl Kirchgessner Foundation, Hope for Vision, and the American Geriatrics Society. Dr. Duncan earned a medical degree at the University of California, San Francisco, where she completed an internship in internal medicine as well as her ophthalmology residency. She then completed a medical retina fellowship at the Scheie Eye Institute at the University of Pennsylvania, where she focused on patients with age-related macular degeneration and inherited retinal degeneration. She returned to UCSF and joined the faculty in 2000. She is a professor of clinical ophthalmology at UCSF and currently serves as the Chair of the Scientific Advisory Board for the Foundation Fighting Blindness.
Speaker -- Living Well With Vision Loss
Neva Fairchild began working for American Foundation for the Blind in 2008 to oversee Esther’s Place at the Center on Vision Loss in Dallas, which was a demonstration model home with over 500 products and environmental adaptations to help people with visual impairments live a life with no limits. She led thousands of demonstration tours of Esther’s Place and taught dozens of volunteers to use and demonstrate everything on display there. Neva has almost 30 years of professional experience in blindness rehabilitation and a lifetime of experience living with low vision. She was diagnosed at an early age with retinopathy of prematurity but learned she has cone rod degeneration in her 30’s.
Prior to joining AFB, Neva was a Vocational Rehabilitation Counselor and an Employment Assistance Specialist with the Texas Department of Assistive and Rehabilitative Services, and a Vocational Evaluator with the Dallas Lighthouse for the Blind.
In 2019, Neva became President Elect of the Association for Education and Rehabilitation of the Blind and Visually Impaired (AER). Throughout her career, she has served in numerous leadership roles, ranging from international to state and local in scope, within AER and the National Rehabilitation Association (NRA). She was also appointed by Governor Rick Perry to the Rehabilitation Council of Texas, where she served as Chair from 2017 to 2019.
Neva holds a bachelor’s in rehabilitation science and a master’s in rehabilitation counseling psychology from the University of Texas Southwestern Medical Center at Dallas. She has been married for over 40 years and has two married children and two grandchildren, thus far. Her Seeing Eye dog, Vinny, is her constant companion.
Paul P. Karos
Keynote Speaker -- Friday Luncheon
Paul Karos has had a successful 35 + year career on Wall Street. He ran hedge fund portfolios for 13 years at his own firm Aplos Advisors, Whitebox Advisors, and Millennium Partners. He was President of Piper Jaffray’s Investment Banking and Equities Division where he led the firm to become a national investment banking player. Earlier in his career, he was Managing Director of CS First Boston, where he was named the number one-ranked airline analyst in the world for five straight years.
For many years he has been involved in a variety of ministries in the Orthodox Church. He has been the Retreat Leader for several men’s, youth, young adult and family camp retreats across the country. He is a bible study leader for the Minnesota Orthodox Christian Prison Ministry Team. He conducts pre-marital counseling with and on behalf of priests as a trained Prepare and Enrich counselor. As of June 2018, Mr. Karos founded Matrona Ministries, a lay Orthodox Christian ministry which performs coaching one-on-one, parish retreats, and Orthodox Christian life assessments. Mr. Karos earned his Master of Arts in Applied Orthodox Theology through the University of Balamand, Lebanon and a BS of Business Administration from the University of Minnesota.
He gives numerous motivational presentations to business and school groups as well.
Mr. Karos is married to his wife, Cindy and has three children. He has been legally blind since his teen years, and is now 99% blind.
Moderator -- Mental Health: Coping with Anxiety, Depression, and Stress Related to Vision Loss or Serving in a Helper Role
Eric Ringham is a senior editor at Minnesota Public Radio News, where he supervises arts and education coverage. Before joining the MPR staff in 2009, he completed almost 30 years at the Star Tribune in Minneapolis, serving most of that time as commentary editor. Ringham also works part-time as a voice and stage actor. He and his spouse, Ann Wagner, live in south Minneapolis.
Ben Shaberman, MA, MS
Speaker -- Your Journeys & Epiphanies: Tell a Story
Ben Shaberman, MA, MS is the Foundation’s Senior Director, Scientific Outreach & Community Engagement. For more than 15 years, Ben has been reporting on retinal research for all of FFB’s electronic and print publications. In addition, he presents the latest scientific advancements at local and national events for patients and families, and conducts various training activities for staff and constituents. Ben also enjoys working with constituents one-on-one to help them understand their retinal disease and the research underway that may benefit them.
Ben has written three books – Retina Boy, Jerry’s Vegan Women, and The Vegan Monologues – all published by Loyola University (Maryland).
His freelance essays and commentaries have been carried by The Washington Post, Chicago Tribune, Baltimore Sun, National Public Radio, and a variety of other newspapers and magazines.
Ben earned a master of arts in writing from Johns Hopkins University, a master of science in systems management from the University of Maryland, and a bachelor of science in computer information science from Cleveland State University.
Ann Wagner, PhD, LP, ABPP
Speaker -- Mental Health: Coping with Anxiety, Depression, and Stress Related to Vision Loss or Serving in a Helper Role
Dr. Ann Wagner is a Board-Certified Clinical Psychologist who has worked at the Minneapolis VA HCS for the past 23 years, serving veterans and their families. She works primarily on the PTSD Clinical Team providing evidenced-based assessments and interventions for PTSD and other trauma-related problems. Dr. Wagner herself is legally blind due to retinitis pigmentosa.
Dr. Benjamin Yerxa
Speaker - Opening Session: Mission Possible! What’s Next for Gene Therapy?
Dr. Benjamin Yerxa
As its Chief Executive Officer, Dr. Yerxa is responsible for the overall management of the Foundation Fighting Blindness, the world’s leading private funder of research on potential treatments and cures for inherited retinal degenerative diseases including age-related macular degeneration. He also serves as CEO of the Retinal Degeneration Fund, a wholly owned, not-for-profit subsidiary focused on making venture philanthropy investments to further the Foundation’s mission.
Dr. Yerxa has more than 25 years’ experience in biotechnology, drug development, and in translating promising research discoveries into clinical milestones and treatments. His experience, from drug discovery through product launches and in leadership positions, is in the pulmonary, oral health, cardiovascular, HIV, and ophthalmology fields.
Just before joining the Foundation, Dr. Yerxa was president and co-founder of Envisia Therapeutics, a company focused on developing novel ocular sustained delivery therapies for the front and back of the eye.
Dr. Yerxa holds 60 U.S. patents. An inventor of DIQUAS™, an innovative treatment for dry eye approved in Japan, he has been involved in the discovery and development of investigational new drugs, Phase 3 clinical programs, new drug applications, and drug approvals.
Dr. Yerxa earned his PhD in organic chemistry from University of California, Irvine, and BA in chemistry from the University of California, San Diego.