Retinitis Pigmentosa International

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RPI's official logo Retinitis Pigmentosa International (logo).jpg
RPI's official logo

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.

Contents

Vision Awards and Eyes of Christmas

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

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]

Founder

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]

See also

Related Research Articles

<span class="mw-page-title-main">Retinitis pigmentosa</span> Gradual retinal degeneration leading to progressive sight loss

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.

<span class="mw-page-title-main">Audio description</span> Audio track with narrator describing visual elements

Audio description, (AD) also referred to as a video description, described video, or more precisely 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 overlap dialogue if deemed necessary. Occasionally when a film briefly has subtitled dialogue in a different language, such as Greedo's confrontation with Han Solo in the 1977 film Star Wars: A New Hope, the narrator will read out the dialogue in character.

This is a partial list of human eye diseases and disorders.

<span class="mw-page-title-main">Usher syndrome</span> Recessive genetic disorder causing deafblindness

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 the most common cause of deafblindness and is at present incurable.

<span class="mw-page-title-main">Visual impairment</span> Decreased ability to see

Visual or vision impairment is the partial or total inability of visual perception. In the absence of treatment such as corrective eyewear, assistive devices, and medical treatment, visual impairment may cause the individual difficulties with normal daily tasks, including reading and walking. The terms low vision and blindness are often used for levels of impairment which are difficult or impossible to correct and significantly impact daily life. In addition to the various permanent conditions, fleeting temporary vision impairment, amaurosis fugax, may occur, and may indicate serious medical problems.

<span class="mw-page-title-main">Choroideremia</span> Medical condition

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.

<span class="mw-page-title-main">Retinitis</span> Medical condition

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.

<span class="mw-page-title-main">Foundation Fighting Blindness</span>

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.

<span class="mw-page-title-main">Retinal degeneration (rhodopsin mutation)</span> Retinopathy

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.

<span class="mw-page-title-main">The Llura Liggett Gund Award</span> Medical award

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.

<span class="mw-page-title-main">Mildred Weisenfeld</span>

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 gene therapy holds a promise in treating different forms of non-inherited and inherited blindness.

<span class="mw-page-title-main">Retinal regeneration</span>

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 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.

The Vision Institute is a research center in the Quinze-Vingts National Eye Hospital in Paris, France. It is one of several such 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.

<span class="mw-page-title-main">Liam Bekric</span> Australian Paralympic swimmer

Liam Bekric is an Australian Paralympic swimmer with a vision impairment. Bekric represented Australia for the first time at the 2016 Rio Paralympics.

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.

References

  1. Garvey, Spencer (2001-06-14). "RPI Hands Out Vision Awards". Daily News. Archived from the original on 2011-07-12.
  2. Vision Awards ~ Medical Research
  3. "Proven Stem Cell Cures Being Thwarted By Politics, Says International Advocate For The Blind". Medical News Today. November 8, 2006. Archived from the original on 2008-11-22. Retrieved 2008-09-27.
  4. St.Clair, Keith (2007-12-23). ""Eyes of Christmas" shares joy with the blind". The Associated Press. Retrieved 2008-09-27.
  5. King, Susan (1998-12-22). "'Eyes of Christmas' Provides the Blind a Window to the Season". T. Retrieved 2008-10-06.
  6. Scott, Tracy L. (2002-12-21). "It's a narrated 'Life' for former president". Los Angeles Times.
  7. Helen Harris ~ Founder of RPI