Virtual 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 Virtual 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!

Speaker

Kapil Bharti, PhD

Senior Investigator, Ocular and Stem Cell Translational Research Section, National Eye Institute

Dr. Kapil Bharti holds a bachelor's degree in biophysics from the Panjab University in Chandigarh, India, where he graduated with highest honors. This was followed by a master degree in biotechnology at the Maharaja Sayaji Rao University in Baroda, India and a diploma in molecular cell biology at the Johann Wolfgang Goethe University at Frankfurt in Germany. Supported by an international Ph.D. student fellowship, he obtained his Ph.D. from the same institution, graduating summa cum laude. His Ph.D. work involved basic biology in the areas of heat stress, cellular chaperones, and epigenetics. From Germany, Dr. Bharti came to the National Institute of Neurological Disorders and Stroke to work with Dr. Heinz Arnheiter as a postdoctoral fellow. While there, he published numerous papers in the areas of transcription factor regulation, pigment cell biology, and the developmental biology of the eye. It is perhaps this combination of diverse backgrounds that led him to develop an interest in the emerging field of stem cell biology, particularly of the retinal pigment epithelium, as he moved into the role of staff scientist. Dr. Bharti has authored numerous publications and has won several awards, including, most recently, being a finalist in the prestigious trans-NIH Earl Stadtman Symposium.

Speaker

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

Kari H. Branham, MS, CGC

Speaker -- My Retina Tracker Registry and Open Access Genetic Testing

Following graduation from the University of Michigan in 2002, Kari joined the ophthalmic genetics research group at the University of Michigan and has served as Director of the Retinal & Macular Dystrophies Family Studies Core. Kari also works as a clinical genetic counselor for the Inherited Retinal Dystrophies Clinic. She supervises students during clinical rotations and has been a mentor for multiple student research projects.

speaker

Martel Catalano

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.

Website: www.martelcatalano.com

SPEAKER

John R. Corneille, JD

Speaker -- How Do You Want to Be Remembered? Easy Ways to Create a Legacy Gift for the Foundation

John R. Corneille, JD is the Director of Legacy Giving at the Foundation Fighting Blindness, having assumed that role part-time in November, 2010, and full-time beginning July, 2016.  Prior to joining the Foundation John enjoyed a 30+ year career as an Attorney in the private practice of law in DeKalb, Illinois.  A large part of his practice was in the areas of estate planning and estate administration.

As a volunteer beginning in 2007 John participated in the Chicago VisionWalk.  He later Chaired that event for 2 years and his VisionWalk Team, since that time and now participating in the Minneapolis Walk as Team John/Julie, has raised over $1 million for the Foundation.

John is almost completely blind from retinitis pigmentosa.  In 2016 he participated in the ReNeuron stem cell clinical trial at the Massachusetts Eye and Ear Infirmary.  He has 2 daughters and 2 grandchildren.  He resides in Minnetonka, MN, with National Trustee and Northern Lights Chapter President Julie Anderson.

Speaker

Daniel de Boer

Speaker -- Promise of Genetic Therapies

Daniel de Boer is the Founder and Chief Executive Officer of ProQR. Daniel is a serial-entrepreneur and passionate advocate for rare disease patients. After one of his children was diagnosed with a rare disease, he started ProQR to develop RNA therapies for rare diseases. Under Daniel’s leadership ProQR developed a platform that yielded a diversified pipeline of potential treatments for rare diseases, and raised over $300M in funding, including an IPO on Nasdaq. Before founding ProQR, Daniel was founder and Chief Executive Officer of several technology companies. Daniel is also co-founder and strategic advisor to Amylon Therapeutics and Wings therapeutics, strategic advisor at Frame Therapeutics, Meatable, Algramo and a member of the board at the Termeer Foundation. In 2018 Daniel was named "Emerging Entrepreneur of the Year" by EY. In 2019 Daniel was selected for the Young Global Leader program at the World Economic Forum.

Speaker

Jacque L. Duncan, MD

Speaker - Participating in Natural History Studies and Clinical Trial

Jacque Duncan, MD 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

Todd Durham, PhD

Speaker -- Participating in Natural History Studies and Clinical Trials

Todd Durham, PhD is Vice President, Clinical and Outcomes Research at the Foundation Fighting Blindness. Todd has training in biostatistics and decision science / outcomes research and is an experienced drug developer with over 24 years experience in early clinical, late clinical, and post-marketing research. He has been involved in numerous successful new drug applications (NDAs), advisory committees, and has significant experience interacting with the US FDA. Dr. Durham has contributed to a number of peer-reviewed articles (both clinical and statistical) and is the co-author of two books, Introduction to Statistics in Pharmaceutical Clinical Trials (Pharmaceutical Press, 2008) and Integrated Cardiac Safety: Assessment Methodologies for Noncardiac Drugs in Discovery, Development and Postmarketing Surveillance (Wiley, 2008). Dr. Durham is a member of the American Statistical Association. He was a doctoral fellow with Bristol Myers Squibb, an independent statistical consultant, and previously employed by Axio Research, Inspire Pharmaceuticals, Quintiles, IQVIA, and Novan.

SPEAKER

Neva Fairchild

Chapter President, Speaker

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.

Speaker

Rick Ferris, MD

Speaker -- Participating in Natural History Studies and Clinical Trials

Rick Ferris, MD is the director of the Division of Epidemiology and Clinical Applications and the clinical director at the National Eye Institute (NEI), National Institutes of Health (NIH). Dr. Ferris earned his A.B. at Princeton University and his M.D. at Johns Hopkins University. Following medical school, he came to the NEI in 1973. Dr. Ferris became a board certified ophthalmologist following the completion of his residency at Johns Hopkins Hospital in 1978. In addition, Dr. Ferris is a board certified epidemiologist.

Dr. Ferris is a medical retina specialist at the NEI. Throughout his 35 years at the NEI Dr. Ferris has had extensive experience in designing and managing clinical trails (of Phase 1, 2 and 3) at the NIH Clinical Center. Dr. Ferris was the project officer of the Diabetic Retinopathy Study, co-chairman of the Early Treatment Diabetic Retinopathy Study (ETDRS) and chairman of the Age-Related Eye Disease Study (AREDS). These studies followed thousands of patients for nearly a decade, and determined that photocoagulation (the use of an intense beam of light, such as a laser to seal off blood vessels or destroy tissue) could reduce the risk of blindness in people with proliferative diabetic retinopathy by more than 90 percent. In addition, the studies illustrated that nutritional supplements could reduce the risk of blindness due to age-related macular degeneration (AMD) by 25 percent.

Currently, he is actively involved in the Diabetic Retinopathy Clinical Research Network and Age-Related Eye Disease Study 2 (AREDS2), a Phase 3 study which is investigating the use of lutein/zeaxanthin (found in leafy greens such as kale) and/or omega-3 polyunsaturated fatty acids as treatment for AMD.

Speaker

Fay Fishman

Speaker -- Understanding and Obtaining Social Security Disability Benefits

Fay Fishman is a partner in the firm of Peterson & Fishman, P.L.L.P. She practices in the areas of Social Security and Veterans’ Disability, representing clients at both the hearings level and in Federal Court. Fay is a frequent local and national lecturer on Social Security issues, including the interplay between Social Security and other benefit programs. She has authored many articles on Social Security issues, published locally and nationally. She provides pro bono legal services through many organizations including the ALS Association, Federal Court Pro Se Program, Veterans’ Pro Bono Consortium and Cancer Legal Care She has received multiple awards for her work, including the Distinguished Pro Bono Service award by the United States District Court, and Volunteer of the Year by Cancer Legal Care. Fay, also bar admitted in Arizona, maintains active Social Security and Veteran’s practices in both Phoenix and Minneapolis. 

Foundation Staff Contact

Gordon Gund

Chairman and Chief Executive Officer, Gund Investment Corporation

Gordon Gund is the Chairman and CEO of Gund Investment Corporation in Princeton, NJ.  He served on the board of the Kellogg Company as its lead director and sat on the board of Corning, Inc.  He is the former majority owner of the Cleveland Cavaliers NBA team and was chairman of the NBA Board of Governors from 1996-1999.  He is a former owner of three NHL teams, the Cleveland Barons, the Minnesota North Stars, and the San Jose Sharks.  He was chairman of the NHL Executive Committee (1982-1990) and is a former member of the U.S. Olympic Committee.

In 1970, Gund lost his sight from retinitis pigmentosa (RP) and in 1971, along with his wife and others, he co-founded the Foundation Fighting Blindness (FFB) to drive the research to find treatments and cures for retinitis pigmentosa, age-related macular degeneration and allied retinal degenerative diseases, which as a group, affect the vision of more than 10 million people in the United States alone and many times that number worldwide.  He chaired the FFB for 45 years and now serves as its chairman emeritus.  The FFB is the world’s largest non-governmental source of research funding for retinal degenerative diseases. 

In addition to his business/philanthropic interests, Gund is an active sculptor. His works are on permanent display at the Philadelphia Museum of Art, Grounds for Sculpture, Hamilton, NJ; Penn Medicine Princeton Medical Center, Princeton, NJ, and the Cleveland Clinic, Cleveland, OH among others.

He is a graduate of Harvard University and has honorary degrees from the University of Maryland, Whittier College, University of Vermont, Goteborg University in Sweden, and the SUNY College of Optometry.

Foundation Staff Contact

Rachel M. Huckfeldt, MD, PhD

Speaker - Participating in Natural History Studies and Clinical Trial

Dr. Rachel Huckfeldt is a full-time member of the Inherited Retinal Disorders Service at Mass. Eye and Ear. She is a retina specialist with expertise in inherited retinal degenerations as well as conditions including age-related macular degeneration and diabetic retinopathy.

Dr. Huckfeldt graduated from Washington University in St. Louis, summa cum laude, with a BA in Biology and Psychology. Subsequently, she earned her MD and PhD in Neuroscience at Washington University. Next, she completed her ophthalmology residency in Harvard Medical School’s Department of Ophthalmology. Before returning to Mass. Eye and Ear, she completed a postdoctoral Research Fellowship in Therapeutics for Inherited Retinal Diseases with Dr. Jean Bennett at the University of Pennsylvania as well as a Medical Retina Fellowship at the University of Iowa. She completed a clinical and research fellowship in inherited retinal degenerations under the guidance of Dr. Eric Pierce, supported by a Foundation Fighting Blindness Clinical/ Research Fellowship Award.

Dr. Huckfeldt has received numerous honors and awards. In particular, she was selected to attend the Heed Resident’s Retreat, later received a Heed Fellowship, and also received an Association for Research in Vision and Ophthalmology/National Eye Institute travel grant.

Speaker

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.

Speaker

Mark E. Pennesi, MD, PhD

Speaker - Participating in Natural History Studies and Clinical Trial

Mark E. Pennesi, MD PhD was born in Mount Kisco, New York, and moved to Dallas, Texas at a young age. For college, he moved to the east coast and attended the University of Pennsylvania for his undergraduate studies. There he graduated summa cum laude with a BS in biomedical engineering and was awarded the Herman P. Schwann award in bioengineering for exemplary scholarship.

Dr. Pennesi's interest in degenerative retinal disorders began shortly after his first year in college, when he spent a summer working at the Retina Foundation of the Southwest. He worked under the supervision of Dr. David Birch and saw patients with retinal degenerations such as retinitis pigmentosa as well as studying animal models of this disease.

After college, Dr. Pennesi completed a combined M.D./Ph.D. at Baylor College of Medicine in Houston, Texas. He performed his graduate Ph.D. work in the Department of Neuroscience in the lab of Dr. Samuel Wu. His thesis work focused on identifying new animal models of retinal degeneration. He received numerous awards while in graduate school, including the John J. Trentin Award for earning the highest GPA in his class and the BRASS scholarship for playing an active role in community service.

For his residency training, Dr. Pennesi spent his internship year in San Diego at Scripps Mercy Hospital, followed by his ophthalmology residency at the University of California, San Francisco. During residency he was awarded the Hogan/Garcia award for the best resident research project. After residency he completed an ophthalmic genetics fellowship under the tutelage of Dr. Richard Weleber.

Dr. Pennesi joined the faculty of Casey Eye Institute and is now an Associate Professor in Ophthalmic Genetics and as the chief of the Ophthalmic Genetics Division.

Both Research to Prevent Blindness and the Foundation Fighting Blindness have recognized Dr. Pennesi with career development awards to support his ambition to conduct transitional research that will bring treatments for diseases such as retinitis pigmentosa from the laboratory to the clinic. Additionally, he is the recipient of the 2011 ARVO/Alcon Early Clinician Scientist, the Alcon Young investigator Award in 2014, and the Casey Eye Institute Resident teach award. His research focuses on developing novel treatments for inherited retinal diseases. He is currently exploring the potential of a new class of drugs to up regulate protective growth factors in the retina.

Speaker

Eric Ringham

Moderator -- Mental Health: Coping with Anxiety, Depression, and Stress Related to Vision Loss or Serving in a Helper Role

Eric Ringham retired last month as a senior editor at Minnesota Public Radio News, where he supervised 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.

Speaker

Eric Rodman, GDMI

Speaker -- Guide Dog Readiness and International Guide Dog Federation Standards

Eric Rodman has been with Leader Dog for five years, where he first started as an intern in Human Resources. Eric graduated from Oakland University with a B.S in Human Resources Development. Eric is raising his second Leader Dog puppy, Legacy.

Speaker

Kris Saha, PhD

Speaker -- Emerging Technologies

Dr. Kris Saha and his laboratory work to use human stem cells together with emerging engineering methods in material science and synthetic biology to make smarter therapeutics, model human disease, and advance personalized medicine. As a Society in Science-Branco Weiss Fellow, Dr. Saha worked with Sheila Jasanoff at Harvard University on “The Constitutional Foundations of Bioethics: A Cross-National Comparison” from September 2010 to December 2011. He is also affiliated with Robert F. and Jean E. Holtz Center for Science & Technology Studies at the University of Wisconsin-Madison.

Speaker

Ed Summers

Speaker -- How to Spead Read Without Vision

Ed Summers is a blind software engineer and an accessibility specialist. He has a B.S. in Computer Science and 20 years of professional experience as a software developer and a development manager.

Ed leads the accessibility team at SAS - the market leader in business analytics software and services that is used at more than 65,000 customer sites around the world. The SAS accessibility team democratizes data and enables users of all abilities to access the power of analytics.

Ed’s personal mission is to enable people with disabilities to realize their full potential in the classroom and the 21st century knowledge economy. He fulfills that mission as a leader in the software industry and disability-related not-for-profit organizations.

Speaker

Karmen Truzpek, MS, CGC

Speaker -- My Retina Tracker Registry and Open Access Genetic Testing

Karmen Trzupek, MS, CGC, is part of the leadership team at InformedDNA where she is responsible for ocular and rare disease genetics services.

Karmen is a certified genetic counselor since 2005. She earned her masters in Genetic Counseling from Northwestern University and a bachelor’s in Microbiology from University of Illinois.

Prior to joining Informed DNA, Karmen was a genetic counselor and research assistant at Oregon Health & Sciences University.

She has been a board member at the Hear See Hope Foundation and Usher Syndrome Coalition. Karmen is also a member of the National Society of Genetic Counselors, member and author of “NSGC Telegenetics Practice Guidelines” Working Group, member of the Association for Research in Vision and Ophthalmology, member and author of American Academy of Ophthalmology Clinical Working Group to develop “Recommendations for the Clinical Assessment of Patients with Inherited Retinal Diseases.”

Speaker

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.

Speaker

Margaret Winn, COMS

Speaker -- Guide Dog Readiness & International Guide Dog Federation Standards

Margaret Winn has been a COMS for 9 years and has previously worked in Pittsburgh and Chicago serving children and adults. She is District 3 Director for the AER O and M Division.

Speaker

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.

Virtual VISIONS 2020 SPONSORS

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Silver Partners

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