Ed Summers is a blind software engineer and an accessibility specialist. He has a B.S. in Computer Science and 25 years of professional experience as a software developer and a development manager. 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.
Ed is Director of Accessibility at SAS, the market leader in analytics software and services. The SAS accessibility team enables people of all abilities to access the power of analytics. Ed also serves on the Advisory Council for the North Carolina Museum of Natural Sciences and the North Carolina Board of Education Advisory Council for the Governor Morehead School for the Blind.
Sam was diagnosed in early adolescence with Stargardt disease, a form of macular degeneration, and was legally blind by his mid-teens. Sam’s first dive into YouTube came in 2012 when he was hired to create content for a mobile technology channel. While in that position he added a couple of videos about phone accessibility apps for people with low vision and received positive feedback from members of the community. This encouraged him to create his own YouTube channel, The Blind Life, dedicated to sharing his experiences living with vision loss. At the time of writing this, The Blind Life (formerly, The Blind Spot) has over 40,000 subscribers and boasts over 600 videos covering a wide variety of topics of interest for those affected by vision loss. Sam tries to show the humorous side of life with low vision while also sharing many tips and tricks he’s learned over the last 30 years. He puts this knowledge to the test as an Assistive Technology Program Coordinator at a nonprofit where he works with visually impaired consumers and helps them learn to use accessibility tools to make their lives easier.
Chief Accessibility Officer with Disability:IN since November 2021.
Prior to Disability:IN Jeff had a distinguished career with Fidelity Investments over the past 28 years. Jeff started Fidelity Investments as a Mutual Fund Representative and worked in a variety of roles including multiple Pilot Start up Roles. In March of 2010, Jeff obtained the Certified Financial Planning Certification, and in 2016, Jeff Founded the Fidelity Investments Enable Employee Resource Group. Today there are 5,147 active members.
In May of 2018, Jeff Co-Founded, and was the Director of the Fidelity Investments Office of Customer Accessibility. Since April 2020, Jeff established and was Director of the Fidelity Investments Procurement Accessibility Program.
Jeff is proud to say he is legally blind with a degenerative eye disease called Retinitis Pigmentosa (RP), and has been an avid user of assistive technologies including Screen Readers and Magnifiers for over two decades. Jeff has the IAAP CPACC Certification, the ADA Title II, III Coordinator Certification and is completing the DHS Trusted Tester Certification.
Jeff is married to his wife Carla of 24 years and they have two daughters, Trishna 19 and Mimi 15. The Wissel’s live in Cincinnati Ohio.
Dan Chung, DO, MA
Dr. Chung is the Chief Medical Officer for SparingVision, an ocular genomic medicine company, focusing on gene agnostic gene therapy and CRISPR gene editing approaches to combat blinding diseases. Prior to his recruitment to SparingVision, Dr. Chung was the Ophthalmology Therapeutic Leader for Spark Therapeutics, Where he led the medical affair group and contributed to areas of clinical development and operations, marketing, commercial, patient advocacy, pre-clinical research and development and business development. Dr. Chung was intimately involved with the development of Luxturna, the first gene therapy approved by the FDA and EMA for use in a blinding genetic disease.
Prior to joining Spark Therapeutics, at the Scheie Eye Institute, University of Pennsylvania, working in retinal gene therapy. Also serving as a sub-PI on the RPE65 gene therapy clinical trial at the Children’s Hospital of Philadelphia (CHOP), and made major contribution to the development of the Phase 3 MLMT novel endpoint, was PI of the MLMT study, and the RPE65 Natural History Study. He completed his ophthalmology residency Summa Health Systems in Akron, Ohio. He then completed fellowships in pediatric ophthalmology and ocular genetics research at the Cole Eye Institute at the Cleveland Clinic, and in retinal gene therapy at the National Eye Institute/NIH in Bethesda, MD.
Alina Dumitrescu, MD
I am a Clinical Associate Prof. of Pediatric Ophthalmology and Inherited Eye Disorders at the University of Iowa. I am also currently serving as the Chair of The Genetic Eye Disorders Committee of the American Association for Pediatric Ophthalmology and Strabismus (AAPOS). I take care of pediatric patients with various eye disorders, and I’m deeply involved in education in this field.
I consider myself very fortunate to be practicing in a field going through revolutionary discoveries and unprecedented medical advances. My long-term career goals are to contribute to progress in the cutting-edge field of ocular genetics in pediatric ophthalmology. My mission is to seek diagnosis and treatment for all pediatric eye disorders and advance medicine so no child will lose eyesight from preventable or treatable diseases.
Mandeep S. Singh, MD, PhD
Dr. Mandeep S. Singh, MD, PhD is an ophthalmologist specializing in inherited retinal diseases and vitreoretinal surgery. He is an Assistant Professor of Ophthalmology and Genetic Medicine at the Wilmer Eye Institute, Johns Hopkins Hospital. He is the founding co-director of the Genetic Eye Diseases Center, where he leads the coordination of care for patients with inherited retinal diseases in cooperation with the Department of Genetic Medicine at Johns Hopkins. He has also developed new surgical devices and operative approaches to safely deliver cell and gene therapy agents to the retina. In his laboratory, his team focuses on retinal regenerative medicine and translational neuroscience. His laboratory research focus is on stem cell therapy for inherited and acquired diseases of the retina, with an emphasis on developing safe and effective stem cell treatments to preserve or restore vision in people experiencing vision loss. He also plays a role in education as the Director of the Johns Hopkins Course in Degenerative Retinal Diseases. For his contributions to research on restoring vision, he received the Ruskell Medal in 2013 and the Bert M. Glaser Award in 2018.
Rusty Kelley, PhD, MBA
Dr. Rusty Kelley is Senior Vice President, Investments & Alliances at Foundation Fighting Blindness and its venture arm, the Retinal Degeneration Fund. Reporting to the CEO, Rusty is responsible for all external investment opportunities that strategically align with the Foundation’s therapeutically focused mission. Rusty brings over 25 years of experience in developing, identifying, and advancing life science technologies to his leadership role.
Rusty received a BA in Chemistry from UNC Chapel Hill, a PhD in Pharmacology & Experimental Therapeutics at LSU’s Health Sciences Center. Rusty was then awarded an American Heart Association postdoctoral fellowship in the School of Medicine at UNC Chapel Hill, and recently earned an MBA from Duke University’s Fuqua School of Business.
Rusty currently serves as a Board Observer for Atsena Therapeutics, Nacuity Pharmaceuticals, and Stargazer Pharmaceuticals. Rusty is also currently a Board Director of the DC-based Health Research Alliance (HRA is a consortium of over 80 private funders & venture philanthropy orgs), and North Carolina’s Council for Entrepreneurial Development (CED).
Christine Kay, MD
Christine Kay, M.D., a vitreoretinal surgeon, joined Vitreoretinal Associates in Gainesville, Florida in the fall of 2014. Prior to this, she was an assistant Professor and director of the retinal fellowship and retinal genetics service at the University of Florida. She graduated magna cum laude from Harvard University with a degree in neuroscience and went to medical school at the University of Florida. She completed her ophthalmology residency at the University of South Florida where she was chief resident, and completed her vitreoretinal fellowship training at the University of Iowa. During her fellowship at University of Iowa, she developed a particular interest in inherited retinal disease (IRD), and this has become her niche in her retina career. Dr. Kay is very interested in characterizing natural history of disease in patients with various inherited retinal diseases. She is the director of electrophysiology, retinal genetics, and clinical trials now at Vitreoretinal Associates, involved as principal investigator (PI) in 15 IRD clinical trials currently. She has a large IRD patient population, with over 900 patients in her clinical database and with 600 of these patients genotyped. She is very interested in genetic testing and has written articles and given lectures on the importance and logistics of genetic testing for IRDs. She organized a faculty of international experts in inherited retinal disease and has taught an instructional course on retinal genetics and gene therapy at the Academy of Ophthalmology annual meeting for the past 7 years.
After completion of her vitreoretinal surgical fellowship, she was awarded a 5-year Career Development Award (with co-sponsors Edwin Stone, M.D., Ph.D. from University of Iowa, and William Hauswirth, Ph.D., from University of Florida) from the Foundation Fighting Blindness (FFB), which funded research (both basic science and clinical) focusing on the development and optimization of a viral vector delivery system for the genetic treatment of achromatopsia. She is a PI and surgeon in the AGTC-sponsored gene therapy treatment trials for both CNGB3 and CNGA3 associated achromatopsia. She was also PI and surgeon for Biogen/Nightstar sponsored XIRIUS gene therapy study for XLRP, and is a PI now for Meira-sponsored phase 3 gene therapy study for XLRP. She is also a PI and leading recruiter in the Alkeus-sponsored Stargardt disease trial, as well as the Foundation Fighting Blindness sponsored natural history trial on patients with Ush2A-associated Usher syndrome (RUSH2A). She is also a PI for Iveric Bio sponsored trial for Stargardt disease and the ProQR sponsored trial for treatment of dominant RP. Dr. Kay is also PI for RegenxBio gene therapy trial for exudative AMD and Gyroscope’s gene therapy trial for atrophic AMD.
Dr. Kay is a member of both Macula Society and Retina Society, and has published over 20 either first or senior author articles in peer-reviewed ophthalmic journals. She has been an invited speaker at the annual Foundation Fighting Blindness VISIONS conference for the past 6 years, and is actively involved in FFB’s clinical trial consortium for inherited retinal disease.
In summary, Dr. Kay is a vitreoretinal surgeon with particular expertise and training in the diagnosis and management of patients with IRDs, has a large patient population and clinical database of patients with various IRDs (RP, LCA, Stargardt, choroideremia, achromatopsia, etc.) and is actively involved in multiple IRD clinical trials.
Kenneth W. Goodman, PhD, FACMI, FACE
Kenneth W. Goodman, PhD, FACMI, FACE, is founder and director of the University of Miami Miller School of Medicine’s Institute for Bioethics and Health Policy and director of the university’s Ethics Programs. The Institute has been designated a World Health Organization Collaborating Center in Ethics and Global Health Policy, one of 13 in the world and the only one in the United States.
Dr. Goodman is a Professor of Medicine at the University of Miami with appointments in the Department of Philosophy, School of Nursing and Health Studies and Department of Public Health Sciences.
He is immediate past chair of the Ethics Committee of AMIA (American Medical Informatics Association), for which organization he co-founded the Ethical, Legal and Social Issues Working Group. He has been elected as a Fellow of the American College of Medical Informatics (FACMI). He is also a Fellow of the American College of Epidemiology (FACE), and past chair of its Ethics Committee, and of the Hastings Center.
He is a co-founder of the North American Center for Ethics and Health Information Technology, a partnership with the Center for Bioethics at Indiana University. He directs the Florida Bioethics Network and chairs the UHealth/University of Miami Hospital Ethics Committee and the Adult Ethics Committee for Jackson Memorial Health System.
Dr. Goodman’s research has emphasized issues in health information technology and in epidemiology and public health. His most recent book, Ethics, Medicine, and Information Technology: Intelligent Machines and the Transformation of Health Care (Cambridge University Press 2016) identifies and analyzes a number of issues in biomedical informatics. He has edited a book on the Terri Schiavo case for Oxford University Press, published a book about ethics and evidence-based medicine for Cambridge University Press, co-authored a book of case studies in ethics and health computing for Springer-Verlag and co-authored another volume of case studies, in ethics in public health, for the American Public Health Association.
He has also co-authored a book on artificial intelligence, edited a book on ethics and medical computing, co-edited a volume on artificial intelligence, and published and presented numerous papers in bioethics, including end-of-life care, the philosophy of science, and computing.
Rob’s career spans more than 24 years of preclinical and clinical research in both ophthalmic and cardiovascular indications, within academia, discovery and development of pharmaceuticals and novel medical devices, and CRO settings. He brings extensive experience managing Phase 1-3 ophthalmic clinical trials, both within the US and internationally, with therapeutic experience with glaucoma, AMD, DME, RP, macular telangiectasia, and achromatopsia. Mr. Rapoza primarily oversees Ora’s US-based clinical operations for those trials involving anterior/posterior segment ocular indications and has been with Ora since 2017.
27-year-old Rebecca Meyers, who goes by Becca, is a two-time Paralympic swimmer. She’s a six-time medalist, winning three gold medals and one silver medal in Rio 2016. She also won the 2015 and 2017 Best Female Athlete with a Disability ESPY Award.
Born and raised in Baltimore, Maryland, Becca was diagnosed with Usher syndrome type 1 (USH1) at four years old. Becca was born profoundly deaf and has severe balance issues as well as partial blindness due to retinitis pigmentosa (RP). Becca began swimming at the age of five, and as she got older, swimming became Becca’s “happy place.” Check out Becca's Beacon Story.
35-year-old Justin Bishop is a pro skateboarder from Las Vegas, Nevada. Justin was diagnosed with retinitis pigmentosa (RP) at the age of eight and began skateboarding around the same time, not thinking at all about when his vision loss would really affect him. Now that Justin’s RP has progressed, he’s developed his own way of skateboarding using sound devices called beeper boxes, which are audible 360 repeat beeping sounds, and a white cane. Justin is working to enhance accessibility in skateboarding for the blind and visually impaired community. Check out Justin's Beacon Story.
Dana Aravich MS, OTR/L
Dana Aravich became an occupational therapist (OT) because she wanted to help others live successfully with disabilities. As an OT, she helps those living with visual impairments optimize their independence with daily activities in the inpatient and outpatient settings at the University of Pittsburgh Medical Center (UPMC) in Pittsburgh, PA.
Dana has 8 years of clinical experience, including additional training in low vision, has published professional papers on improving the clinical care of those living with functional vision deficits, won an award for creating a telehealth program for those with low vision, and has presented at professional conferences. Dana has retinitis pigmentosa (RP) and incorporates her lived experiences into her work with others.
Dana enjoys finding creative solutions to problems, hiking, yoga, and spending time with her son.
Robert Hufnagel, MD, PhD
Rob Hufnagel, a 2021 Lasker Scholar, is dedicated to understanding mechanisms of human genome variation that cause blindness in children. He uses a translational approach combining clinical molecular approaches and developmental biology to improve diagnosis and establish gene:disease and genotype:phenotype relationships. In particular, he uses genomics, stem cell engineering, and gene editing to establish patient-centered disease models for translational and preclinical studies. After receiving his M.D. and Ph.D. from the University of Cincinnati (Cincinnati, Ohio), he completed his Pediatrics and Clinical Genetics residency at Cincinnati Children’s Hospital, followed by fellowships in Clinical Ophthalmic Genetics at the National Eye Institute (NEI/NIH) and Clinical Molecular Genetics and Genomics at the National Human Genome Research Institute (NHGRI/NIH). He loves spending time with his family and their dog, Helix.
Astra Dinculescu, PhD
Astra Dinculescu, PhD, currently holds a position as Assistant Professor at the Department of Ophthalmology in the College of Medicine, University of Florida. She has extensive experience in recombinant AAV vector biology and gene therapy in animal models. She was recognized as an Emerging Vision Scientist by the National Alliance for Eye and Vision Research (AEVR) and met with Congress members to advocate for vision research and funding support in the continuing fight to prevent blindness. In 2017, she was elected to serve a three-year term on the Scientific Program Committee for the Association for Research in Vision and Ophthalmology (ARVO), representing the Biochemistry section. Research conducted in Dr. Dinculescu laboratory is mainly dedicated to developing therapeutic strategies for Usher syndrome type III (USH3), an inherited disorder caused by mutations in the Clarin-1 gene (CLRN1), leading to retinal degeneration and progressive hearing loss. She and others reported the surprising discovery that CLRN1 transcripts in human, non-human primate, and mouse adult retinas are only detected in Müller glia, placing this cell type at the center of future mechanistic and therapeutic studies to prevent vision loss in USH3 disease (Xu et al, Journal of Pathology , 2020). She has a strong interest in understanding the molecular mechanisms underlying the loss of photoreceptor neurons in USH3, in order to develop a safe gene-therapy approach for preventing blindness in this disorder. To achieve this goal, Dr. Dinculescu and her collaborators developed new animal models that will contribute greatly to the advancement of our understanding of this disorder, as well as our ability to treat it. Dr. Dinculescu’s research has been funded by the National Eye Institute, Foundation Fighting Blindness, and BrightFocus Foundation.
Jacque Duncan, MD
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 Research to Prevent Blindness, Karl Kirchgessner Foundation, Hope for Vision, and American Geriatrics Society in addition to a Career Development Award from the Foundation Fighting Blindness.
Dr. Duncan earned a medical degree at the University of California, San Francisco, where she completed an ophthalmology residency. She also 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. Dr. Duncan is chair of the Foundation Fighting Blindness Scientific Advisory Board.
Rachel Huckfeldt, MD, PhD
Dr. Rachel Huckfeldt is an Assistant Professor of Ophthalmology at Harvard Medical School and a clinician-scientist at Massachusetts Eye and Ear (MEE). She completed her MD and PhD training at Washington University in St Louis with PhD research focused on mechanisms of retinal development. After finishing an ophthalmology residency at Mass Eye and Ear, Dr. Huckfeldt conducted postdoctoral research focused on novel therapeutics in the lab of Dr. Jean Bennett at the University of Pennsylvania followed by clinical fellowships in medical retina (University of Iowa) and inherited retinal disorders (MEE). Dr. Huckfeldt’s clinical practice focuses on inherited retinal disorders and the medical management of retinal conditions. She is dedicated to bringing new therapies to patients with inherited retinal disorders, and she is the principal investigator for MEE’s participation in multiple first-in-human clinical trials of genetic therapies. Dr. Huckfeldt is also the director of the Inherited Retinal Degenerations fellowship at MEE and the incoming Co-Chair Elect of the Foundation Fighting Blindness Consortium.
Cathy Bowes Rickman, PhD
Dr. Catherine Bowes Rickman is a Professor in the Departments of Ophthalmology and Cell Biology at Duke University in Durham, NC. She earned her doctoral degree from the University of California, Los Angeles and completed her postdoctoral fellowship at the Jules Stein Eye Institute. Dr. Bowes Rickman is a translational scientist whose research efforts over two decades have been focused on the molecular/cell biology and pathobiology of age-related macular degeneration (AMD). She holds the George and Geneva Boguslavsky Endowed Vision Research Chair, which helps support her research program. In an effort to better understand the pathophysiology of AMD, she has created a number of murine models that recapitulate many aspects of human AMD and point the way toward eventual treatments for AMD. Dr. Bowes Rickman is now studying mouse models engineered to express humanized CFH (normal or AMD riskassociated variants) combined with other known AMD risk factors (advanced age and diet). These mice develop many aspects of the human AMD phenotype and provide an in vivo means to interrogate the pathogenic contribution of genetic, inflammatory, and environmental factors on AMD pathogenesis. Dr. Bowes Rickman is using these models to test emergent therapies for the dry form of AMD, for which there are no effective therapies currently for humans.
James Handa, MD
James T. Handa, MD is the Robert Bond Welch Professor and Chief of the Retina Division, The Wilmer Eye Institute, Johns Hopkins University. He attended Brown University and the University of Pennsylvania School of Medicine followed by an Ophthalmology residency at Wills Eye Hospital and Vitreoretinal surgery fellowship at the Duke Eye Center under the tutelage of Robert Machemer, MD, the inventor of vitrectomy. Dr. Handa is an active Vitreoretinal surgeon who manages all types of complex medical and surgical vitreoretinal disorders. He was an implanting surgeon for the Argus II retinal chip implant that led to its FDA approval. Dr. Handa’s research focuses on the critical events that trigger the onset of early AMD. Specifically, he studies how cigarette smoking contributes to AMD, how different compartments of retinal cells are damaged by smoke, and how cell protection systems become damaged with smoking. Dr. Handa currently holds 2 NIH R01s and an STTR award, and a Foundation Fighting Blindness award. Dr. Handa was one of 9 scientists from around the world selected by the NIH to serve on the AMD Pathobiology Group that was tasked to develop a roadmap for accelerating the development of AMD treatment.
Kevin Ferenchak, MD
Dr. Kevin Ferenchak will be joining the ophthalmology faculty at Emory University in Atlanta, Georgia later this summer as a dual fellowship trained vitreoretinal surgeon and inherited retinal degenerations (IRD) specialist. He is dedicated to teaching patients and ophthalmology residents, and for these efforts and his clinical performance he was named Harvard Medical School’s Ophthalmology Fellow of the Year in 2020 and received the Fellow Teaching Award from Mayo Clinic in 2021.
Dr. Ferenchak earned his medical degree at Rush Medical College and completed his ophthalmology residency at Cook County Hospital in Chicago. He completed fellowships focused on retina research and IRD at Massachusetts Eye and Ear/Harvard Medical School, where he was a co-investigator on numerous clinical trials for IRD. He is completing his vitreoretinal surgery fellowship at Mayo Clinic in Rochester, Minnesota, and he looks forward to continuing his participation in gene and cell therapy clinical trials for patients with IRD at Emory.
Dr. Ann Wagner and Eric Ringham
Dr. Ann Wagner is a Board Certified Clinical Psychologist who has worked at the Minneapolis VA HCS for the past 25 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.
Eric Ringham is a freelance writer and editor, with side careers in stage acting and voiceover work. He is a former senior editor at Minnesota Public Radio News and commentary editor at the Star Tribune in Minneapolis, Minnesota. He and his spouse, Ann Wagner, live in Minneapolis.
DJ is a Lead Strategist with Turnkey Consulting working with forward thinking organizations to shape a thriving future.
He has held critical leadership roles at some of the largest non- profits. DJ worked extensively in the United Way Network having personally developed over $50 million in planned gifts, led teams supporting over $1.2 billion in annual individual giving, and helped launch over $1 billion in initiative and endowment campaigns.
After United Way, DJ led development for The ALS Association and worked to double system-wide revenue following Ice Bucket Challenge. He also served as the Senior VP Market Leadership and Chief Development Officer for March of Dimes responsible for transforming the organization, growing $130 million in annual revenue and leading over 300 staff.
DJ earned a Master’s in non-profit management from Alfred University and a J.D. from the David A. Clarke School of Law. He is a member of the D.C. Bar.
DJ, his wife Allison, and daughters Madeleine and Grayson currently live in Alexandria, VA. When DJ is not working you can find him riding his Vespa GT200 and hiking.