Retinitis Pigmentosa International (RPI or RP International) is an international, 501(c)(3) non-profit organization that is committed to focusing world attention on eye problems. RP International promotes research, public awareness, education, and human services for victims of degenerative eye diseases.
RPI presents and organizes the Vision Awards annually from Hollywood, which raises funds for RP International, and is dedicated to honoring individuals and companies who have illustrated exceptional "vision, foresight, and insight" in the creative arts, related technologies and medical research. [1] The event also highlights scientific landmarks in adult stem cell transplants, microchip implants, and pharmaceuticals. [2] In 2006, the Vision Awards took special note of adult stem cell research by honoring a patient who was able to regain sight thanks to the LSU technique after more than 20 years of blindness. [3]
The "Eyes of Christmas" is a television program in which the blind and visually impaired people can "watch" holiday shows by hearing descriptive narrations of the shows. The program is aired on a variety of cable networks and independent television stations, and features celebrities presenting holiday music, memories, and films, over the 12 days leading up to Christmas. [4]
TheatreVision is an RPI program that makes films accessible to the visually impaired. It incorporates a special soundtrack in films that runs concurrently with the dialogue of the picture. The track provides a "descriptive narration" of what is being shown on the screen. Forrest Gump was the first film to be completed in this format, making its TheatreVision debut before a visually challenged audience. [5] These formatted films are made available to the visually impaired through theatres, libraries, charitable organizations, special screenings, and schools for the blind.
Many TheatreVision presentations are audio described by celebrities, often who have a connection to the film. The 1999 Disney film Tarzan was described by actor Tony Goldwyn, who also performed the voice of the lead character in the film, and Samuel L. Jackson performed the description for Star Wars: Episode I – The Phantom Menace . TheatreVision has also prepared special presentations for television, often providing live descriptions of the annual Academy Awards, and notably describing the classic film It's a Wonderful Life for NBC's traditional annual broadcast of the film (with the descriptive audio carried on the SAP (Second Audio Program) channel), with the narrative description performed by former president George H. W. Bush. [6]
Helen Harris is the founder of RPI and a longtime activist for the blind and vision impaired. As a housewife, painter, and young mother, Harris learned that she was slowly going blind from retinitis pigmentosa. She then learned that two of her three sons had inherited her disease. In 1973, she began RPI to provide support and counsel to those who suffer from retinitis pigmentosa and other degenerative eye diseases, and to find a cure for those diseases. [7]
Retinitis pigmentosa (RP) is a genetic disorder of the eyes that causes loss of vision. Symptoms include trouble seeing at night and decreasing peripheral vision. As peripheral vision worsens, people may experience "tunnel vision". Complete blindness is uncommon. Onset of symptoms is generally gradual and often begins in childhood.
The National Eye Institute (NEI) was established in 1968. It 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.
Audio description, also referred to as a video description, described video, or more precisely called a visual description, is a form of narration used to provide information surrounding key visual elements in a media work for the benefit of blind and visually impaired consumers. These narrations are typically placed during natural pauses in the audio, and sometimes during dialogue if deemed necessary.
This is a partial list of human eye diseases and disorders.
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.
Visual impairment, also known as vision impairment, is a medical definition primarily measured based on an individual's better eye visual acuity; in the absence of treatment such as correctable eyewear, assistive devices, and medical treatment– visual impairment may cause the individual difficulties with normal daily tasks including reading and walking. Low vision is a functional definition of visual impairment that is chronic, uncorrectable with treatment or correctable lenses, and impacts daily living. As such low vision can be used as a disability metric and varies based on an individual's experience, environmental demands, accommodations, and access to services. The American Academy of Ophthalmology defines visual impairment as the best-corrected visual acuity of less than 20/40 in the better eye, and the World Health Organization defines it as a presenting acuity of less than 6/12 in the better eye. The term blindness is used for complete or nearly complete vision loss.
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.
Retinitis is inflammation of the retina in the eye, which can permanently damage the retina and lead to blindness. The retina is the eye's "sensing" tissue. Retinitis may be caused by a number of different infectious agents. Its most common form, called retinitis pigmentosa, has a prevalence of one in every 2,500–7,000 people. This condition is one of the leading causes that leads to blindness in patients in the age range of 20–60 years old.
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.
Retinal degeneration is a retinopathy which consists in the deterioration of the retina caused by the progressive death of its cells. There are several reasons for retinal degeneration, including artery or vein occlusion, diabetic retinopathy, R.L.F./R.O.P., or disease. These may present in many different ways such as impaired vision, night blindness, retinal detachment, light sensitivity, tunnel vision, and loss of peripheral vision to total loss of vision. Of the retinal degenerative diseases retinitis pigmentosa (RP) is a very important example.
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.
Mildred Mosler Weisenfeld is the Brooklyn-born founder of national not-for-profit foundation the National Council to Combat Blindness in 1946, now known as Fight for Sight, an organization based in New York City that provides initial funds to promising scientists early in their careers. For 50 years, Weisenfeld was a one-woman campaign to increase funding for eye research, despite losing her own vision and having no scientific training.
Blind artists are people who are physically unable to see normally, yet work in the visual arts. This seeming contradiction is overcome when one understands that only around 10% of all people with blindness can see absolutely nothing at all. As such most blind people can in fact perceive some level of light and form, and it is by applying this limited vision that many blind artists create intelligible art. Also, a blind person may once have been fully sighted and yet simply lost part of their vision through injury or illness. Blind artists are able to offer insight into the study of blindness and the ways in which art can be perceived by the blind, in order to better improve art education for the visually impaired.
Retinal regeneration refers to the restoration of vision in vertebrates that have suffered retinal lesions or retinal degeneration.
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 in 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.
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.
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.