The mission of the Foundation Fighting Blindness is to fund research that will lead to the prevention, treatment and cures for the entire spectrum of retinal degenerative diseases, including retinitis pigmentosa, macular degeneration, Usher syndrome, Stargardt disease and related conditions. These diseases, which affect more than 10 million Americans and millions more throughout the world, often lead to severe vision loss or complete blindness.[1]
The Foundation Fighting Blindness was founded as the National Retinitis Pigmentosa Foundation in 1971 by Gordon and Lulie Gund, Bernard and Beverly Berman, and other dedicated leaders to find cures for retinal degenerations at a time when very little was known about those vision-robbing diseases. Blind from retinitis pigmentosa, Gund is Chairman of the Foundation Fighting Blindness and Chief Executive Officer and Chairman of Gund Investment Corporation.[2] He is a former majority owner of the Cleveland Cavaliers (National Basketball Association) and was co-founder and part owner of the San Jose Sharks (National Hockey League). Berman died in 1996.
Through private individual contributions, corporate philanthropy and community-based fundraising activities, the Foundation has raised more than $500 million since its founding and is the largest non-governmental source of research funds for inherited retinal degenerative diseases.[3]
The Foundation funds research in a number of scientific areas including: genetics, gene therapy, nutrition, stem cells, and pharmaceutical therapies.[4]
After decades of Foundation-funded research, several promising treatments have moved into human clinical trials, including a landmark gene therapy human study for Leber congenital amaurosis, which has enabled more than 40 children and young adults who were virtually blind to read several lines on an eye chart and see in dimly lit settings.[5] This success paved the way for the development of gene therapies now in clinical trials to treat a wide range of other retinal conditions, including Stargardt disease, Usher syndrome, and age-related macular degeneration.
Valproic acid, a drug that is FDA-approved to treat epilepsy, has shown promise for preserving vision in people with certain forms of retinitis pigmentosa. The Foundation has launched a human trial to test this drug and, if effective, move it quickly out to patients who need it.
Foundation-funded researchers are using stem cells derived from a variety of sources, including a person's own skin, to create healthy retinal cells that can potentially restore vision. Stem cell treatments hold great promise for people with advanced vision loss.
The Foundation is also funding clinical trials of a tiny innovative capsule that is inserted into the eye to slow vision loss from a variety of retinal degenerative diseases.[6]
Foundation Fighting Blindness Clinical Research Institute
The Foundation Fighting Blindness Clinical Research Institute works to accelerate the translation of laboratory-based research into clinical trials for treatments and cures of retinal degenerative diseases. As a support organization and the translational arm of the Foundation Fighting Blindness, it aims to develop a bridge between scientific, clinical, governmental, pharmaceutical and financial communities to advance clinical trials of sight-saving treatments and therapies. The FFB Clinical Research Institute invests funds to support Phase I and Phase II clinical trials to expedite the commercialization of treatments for conditions such as retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of retinal diseases, and also provides assistance to the management of clinical trials and subsequent commercialization.
Grants
The Foundation Fighting Blindness currently funds more than 120 grants, including the modules of 14 Centers. The research projects of these grants are conducted by research investigators at more than 70 Institutions, Eye Hospitals and Universities. In addition to funding researchers within the United States, Foundation funding extends internationally including laboratories in Canada, England, France, Germany, Italy, Israel, China, and the Netherlands.
Fundraising and public education
The Foundation has nearly 50 volunteer-led chapters across the U.S. These volunteers raise funds for research, increase public awareness, and provide support to their communities.[4] Through its communications and public health outreach programs, the Foundation educates individuals affected with retinal disease and their families about research developments, clinical trials, and coping with low vision.
In addition to grants and individual and corporate gifts, the Foundation hosts a series of fundraising events across the country, including VisionWalks, Dining in the Dark dinners, and Visionary Awards galas. As promising treatments move into critical human studies, the need for research funding is greater than ever before.
VisionWalk
VisionWalk is the national signature fundraising event of the Foundation Fighting Blindness that also acts as a celebration of the Fighting Blindness community. Occurring every fall in 36 locations, participants join teams and fund raise in the month leading up to the event. The event itself is a 5k walk to fund raise for research sponsored by FFB, as well as to raise awareness of low vision and blind individuals. There is an emphasis on the ability and accomplishments of people impacted by lack of vision.
Since its inception in the spring of 2006, the program has raised over $55 million to fund sight-saving research with over 200,000 participants in the form of volunteers, team members and, sponsors.[7]
Due to the COVID-19 virus, the FFB held the fall 2020 VisionWalk online, asking participants to take steps to support the virtual VisionWalk by using a treadmill, going on a socially distanced walk, or having a virtual meeting with teammates.[8]
Dining in the Dark
The Foundation Fighting Blindness hosts approximately 10 annual Dining in the Dark fundraising events in various cities around the U.S. Meant to increase awareness about the challenges of the visually impaired, Dining in the Dark is an event where participants dine in the dark. This idea of "dark dining" is not unique to the foundation, as it is also practised in other locations.[9]
Race to Cure Blindness
Race to Cure Blindness is a fundraising program where participants utilize any marathon, triathlon, bike race, or other racing event as a platform to raise money for the Foundation Fighting Blindness.
VISIONS conference
VISIONS is the national conference of the Foundation Fighting Blindness. It is the only event of its kind - created solely for individuals and families who are affected by retinal diseases. Nowhere else will people find such easy access to information on the latest retinal research and clinical trials, the doctors performing the work, coping strategies, and other families from around the country living with the same diseases.
Vision Seminar Series
The Foundation Fighting Blindness' Vision Seminar Series provides a supportive learning environment for people living with macular degeneration, retinitis pigmentosa, and other inherited retinal degenerative diseases. Held around the country, each half-day, free seminar offers patients a forum to hear from prominent doctors and scientists about the latest retinal degenerative disease research, new treatments, therapies, and clinical trials. Vision Seminars not only give affected individuals and their families critical information about research and treatments, but they also provide the hope necessary to cope with these debilitating diseases.
Partners for Retinal Health
Through its Partners for Retinal Health program, the Foundation works with retinal specialists throughout the country to provide the information, resources and hope patients need upon being diagnosed with a retinal degenerative disease.
Retinitis pigmentosa (RP) is a genetic disorder of the eyes that causes loss of vision. Symptoms include trouble seeing at night and decreased peripheral vision. As peripheral vision worsens, people may experience "tunnel vision". Complete blindness is uncommon. Onset of symptoms is generally gradual and often in childhood.
The National Eye Institute (NEI) was established in 1968 and is located in Bethesda, Maryland. The NEI is one of 27 institutes and centers of the US National Institutes of Health (NIH), an agency of the US Department of Health and Human Services. The mission of NEI is to prolong and protect the vision of the American people. The NEI conducts and performs research into treating and preventing diseases affecting the eye or vision.
Usher syndrome, also known as Hallgren syndrome, Usher–Hallgren syndrome, retinitis pigmentosa–dysacusis syndrome or dystrophia retinae dysacusis syndrome, is a rare genetic disorder caused by a mutation in any one of at least 11 genes resulting in a combination of hearing loss and visual impairment. It is a major cause of deafblindness and is at present incurable.
The Lions Eye Institute (LEI) is an Australian medical research institute affiliated with the University of Western Australia. It was established in 1983 with support of the Lions Club of Australia and headquartered in the Perth suburb of Nedlands, Western Australia. The LEI is a not-for-profit centre of excellence that combines an ophthalmic clinic with scientific discovery developing techniques for the prevention of blindness and the reduction of pain from blinding eye conditions.
Leber congenital amaurosis (LCA) is a rare inherited eye disease that appears at birth or in the first few months of life.
Choroideremia is a rare, X-linked recessive form of hereditary retinal degeneration that affects roughly 1 in 50,000 males. The disease causes a gradual loss of vision, starting with childhood night blindness, followed by peripheral vision loss and progressing to loss of central vision later in life. Progression continues throughout the individual's life, but both the rate of change and the degree of visual loss are variable among those affected, even within the same family.
Stargardt disease is the most common inherited single-gene retinal disease. It usually has an autosomal recessive inheritance caused by mutations in the ABCA4 gene. Rarely it has an autosomal dominant inheritance due to defects with ELOVL4 or PROM1 genes. It is characterised by macular degeneration that begins in childhood, adolescence or adulthood, resulting in progressive loss of vision.
Conorenal syndrome, is a collection of medical conditions that seem to have a common genetic cause.
The Llura Liggett Gund Award honors researchers for career achievements that have significantly advanced the research and development of preventions, treatments and cures for eye disease.
Retinal gene therapy holds a promise in treating different forms of non-inherited and inherited blindness.
Abraham Leon Kornzweig,, born in New York, a physician and ophthalmologist specializing in geriatric ophthalmology. He opened a new field in investigative medicine, and founded the Society of Geriatric Ophthalmology. He was also widely known as the co-discoverer and namer of Bassen-Kornzweig Syndrome, also called Abetalipoproteinemia. It was first noted by the United States physician Frank Bassen, who partnered with Kornzweig to identify and describe causes and symptoms of the disease.
Lineage Cell Therapeutics, Inc. is a clinical-stage biotechnology company developing novel cell therapies for unmet medical needs. Lineage’s programs are based on its robust proprietary cell-based therapy platform and associated in-house development and manufacturing capabilities. With this platform Lineage develops and manufactures specialized, terminally differentiated human cells from its pluripotent and progenitor cell starting materials. These differentiated cells are developed to either replace or support cells that are dysfunctional or absent due to degenerative disease or traumatic injury or administered as a means of helping the body mount an effective immune response to cancer.
José-Alain Sahel is a French ophthalmologist and scientist. He is currently the chair of the Department of Ophthalmology at the University of Pittsburgh School of Medicine, director of the UPMC Eye Center, and the Eye and Ear Foundation Chair of Ophthalmology. Dr. Sahel previously led the Vision Institute in Paris, a research center associated with the one of the oldest eye hospitals of Europe - Quinze-Vingts National Eye Hospital in Paris, founded in 1260. He is a pioneer in the field of artificial retina and eye regenerative therapies. He is a member of the French Academy of Sciences.
Built in the heart of the Quinze-Vingts National Eye Hospital Paris, France, the Vision Institute is one of the most important research centers in Europe on eye diseases.
Stephen H. Tsang is an American ophthalmologist and geneticist. He is currently a Professor of Ophthalmology, and Pathology and Cell Biology at Columbia University Irving Medical Center in New York. He has been married to Jing Peng in 2020.
Robert E. MacLaren FMedSci FRCOphth FRCS FACS VR is a British ophthalmologist who has led pioneering work in the treatment of blindness caused by diseases of the retina. He is Professor of Ophthalmology at the University of Oxford and Honorary Professor of Ophthalmology at the UCL Institute of Ophthalmology. He is a Consultant Ophthalmologist at the Oxford Eye Hospital and an Honorary Consultant Ophthalmologist at the Great Ormond Street Hospital. He is also an Honorary Consultant Vitreo-retinal Surgeon at the Moorfields Eye Hospital. MacLaren is an NIHR Senior Investigator, or lead researcher, for the speciality of Ophthalmology. In addition, he is a member of the research committee of Euretina: the European Society of Retina specialists, Fellow of Merton College, in Oxford and a Fellow of the Higher Education Academy.
Occult macular dystrophy (OMD) is a rare inherited degradation of the retina, characterized by progressive loss of function in the most sensitive part of the central retina (macula), the location of the highest concentration of light-sensitive cells (photoreceptors) but presenting no visible abnormality. "Occult" refers to the degradation in the fundus being difficult to discern. The disorder is called "dystrophy" instead of "degradation" to distinguish its genetic origin from other causes, such as age. OMD was first reported by Y. Miyake et al. in 1989.
Paul A. Sieving is a former director of the National Eye Institute, part of the U.S. National Institutes of Health. Prior to joining the NIH in 2001, he served on the faculty of the University of Michigan Medical School as the Paul R. Lichter Professor of Ophthalmic Genetics. He also was the founding director of the Center for Retinal and Macular Degeneration in the university's Department of Ophthalmology and Visual Sciences.
Retina UK is a charity based in Buckingham, England, that works for people affected by inherited sight loss. This includes conditions such as retinitis pigmentosa (RP), Usher syndrome, Stargardt disease and Leber congenital amaurosis.
William Anthony Beltran is a French–American ophthalmologist. He is a professor of ophthalmology in the Department of Clinical Sciences and Advanced Medicine and director of the Division of Experimental Retinal Therapies at the University of Pennsylvania School of Veterinary Medicine. In 2020, Beltran was elected a Member of the National Academy of Medicine for his research focus on inherited retinal degeneration.
References
↑ The National Alliance for Eye and Vision Research, accessed July 16, 2008
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