Foundation Fighting Blindness
Encyclopedia
The mission of the Foundation Fighting Blindness is to fund research that will lead to preventions, treatments, and cures for retinal degenerative diseases including: retinitis pigmentosa, macular degeneration, Usher syndrome and Stargardt disease. These diseases affect more than 10 million Americans and millions more throughout the world. These conditions often lead to severe vision loss or complete blindness.
The Foundation Fighting Blindness was founded as the National Retinitis Pigmentosa Foundation in 1971 by Bernard and Beverly Berman, and a team of 6 other dedicated leaders to find cures for retinal degenerations at a time when very little was known about retinal degeneration. Blind from retinitis pigmentosa, Gund is Chairman of the Foundation Fighting Blindness and Chief Executive Officer and Chairman of Gund Investment Corporation. He is former majority owner of the Cleveland Cavaliers
(National Basketball Association
) and former 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 $350 million since its founding and is the largest non-governmental source of research funds for retinal degenerative diseases.
, macular degeneration
, Usher syndrome
, Stargardt disease, Best disease, choroideremia
, retinoschisis
, Leber congenital amaurosis, Bardet-Biedl syndrome
, cone dystrophy
, cone-rod dystrophy, rod-cone dystrophy, achromatopsia
, Refsum disease, and other rare retinal degenerative diseases. The Foundation funds research in a number of scientific areas including: genetics, gene therapy, nutrition, stem cells, and pharmaceutical therapies.
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.
In addition to grants and corporate gifts, the Foundation hosts a series of events across the country, including VisionWalk, Dining in the Dark, and a series of galas and dinners including the For the Love of Sight Dinner held in Washington, D.C., the Visionary Award Dinner in Baltimore, Maryland, and the Humanitarian Award Dinner in New York City.
If you would like to use your racing effort to raise money for the Foundation Fighting Blindness, the Race to Cure Blindness is an excellent way to make your participation more meaningful and to motivate you when the going gets tough.
Your participation will help raise vital funds that will support the Foundation's urgent mission to drive the research that will provide preventions, treatments, and cures for the entire spectrum of retinal degenerative diseases.
This program unites people participating in races throughout the country with a very worthy cause furthering the mission of the Foundation Fighting Blindness!
The Foundation Fighting Blindness was founded as the National Retinitis Pigmentosa Foundation in 1971 by Bernard and Beverly Berman, and a team of 6 other dedicated leaders to find cures for retinal degenerations at a time when very little was known about retinal degeneration. Blind from retinitis pigmentosa, Gund is Chairman of the Foundation Fighting Blindness and Chief Executive Officer and Chairman of Gund Investment Corporation. He is former majority owner of the Cleveland Cavaliers
Cleveland Cavaliers
The Cleveland Cavaliers are a professional basketball team based in Cleveland, Ohio. They began playing in the National Basketball Association in 1970 as an expansion team...
(National Basketball Association
National Basketball Association
The National Basketball Association is the pre-eminent men's professional basketball league in North America. It consists of thirty franchised member clubs, of which twenty-nine are located in the United States and one in Canada...
) and former owner of the San Jose Sharks
San Jose Sharks
The San Jose Sharks are a professional ice hockey team based in San Jose, California, United States. They are members of the Pacific Division of the Western Conference of the National Hockey League...
(National Hockey League
National Hockey League
The National Hockey League is an unincorporated not-for-profit association which operates a major professional ice hockey league of 30 franchised member clubs, of which 7 are currently located in Canada and 23 in the United States...
). Berman died in 1996.
Through private individual contributions, corporate philanthropy and community-based fundraising activities, the Foundation has raised more than $350 million since its founding and is the largest non-governmental source of research funds for retinal degenerative diseases.
Diseases Studied
Foundation-funded scientists at institutions throughout the world conduct research for the entire spectrum of retinal degenerative diseases including: retinitis pigmentosaRetinitis pigmentosa
Retinitis pigmentosa is a group of genetic eye conditions that leads to incurable blindness. In the progression of symptoms for RP, night blindness generally precedes tunnel vision by years or even decades. Many people with RP do not become legally blind until their 40s or 50s and retain some...
, macular degeneration
Macular degeneration
Age-related macular degeneration is a medical condition which usually affects older adults and results in a loss of vision in the center of the visual field because of damage to the retina. It occurs in “dry” and “wet” forms. It is a major cause of blindness and visual impairment in older adults...
, Usher syndrome
Usher syndrome
Usher syndrome is a relatively rare genetic disorder that is a leading cause of deafblindness and that is associated with a mutation in any one of 10 genes. Other names for Usher syndrome include Hallgren syndrome, Usher-Hallgren syndrome, rp-dysacusis syndrome and dystrophia retinae dysacusis...
, Stargardt disease, Best disease, choroideremia
Choroideremia
Choroideremia is an X-linked recessive retinal degenerative disease that leads to the degeneration of the choriocapillaris, the retinal pigment epithelium, and the photoreceptor of the eye....
, retinoschisis
Retinoschisis
Retinoschisis is an eye disease characterized by the abnormal splitting of the retina's neurosensory layers, usually in the outer plexiform layer, resulting in a loss of vision in the corresponding visual field in some rarer forms...
, Leber congenital amaurosis, Bardet-Biedl syndrome
Bardet-Biedl syndrome
The Bardet–Biedl syndrome is a ciliopathic human genetic disorder that produces many effects and affects many body systems. It is characterized principally by obesity, retinitis pigmentosa, polydactyly, mental retardation, hypogonadism, and renal failure in some cases.-Summary of the...
, cone dystrophy
Cone dystrophy
A cone dystrophy is an inherited ocular disorder characterized by the loss of cone cells, the photoreceptors responsible for both central and color vision....
, cone-rod dystrophy, rod-cone dystrophy, achromatopsia
Achromatopsia
Achromatopsia , is a medical syndrome that exhibits symptoms relating to at least five separate individual disorders. Although the term may refer to acquired disorders such as color agnosia and cerebral achromatopsia, it typically refers to an autosomal recessive congenital color vision disorder,...
, Refsum disease, and other rare retinal degenerative diseases. The Foundation funds research in a number of scientific areas including: genetics, gene therapy, nutrition, stem cells, and pharmaceutical therapies.
Clinical Trials
After decades of Foundation-funded research, several promising treatments have recently moved into human clinical trials, including a landmark gene therapy for Leber congenital amaurosis, which has enabled a few young adults who were virtually blind to read several lines on an eye chart and see in dimly lit settings. This success paves the way for the development of gene therapies to treat a wide range of other retinal conditions.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.
National Neurovision Research Institute
In 2004, the Foundation established the National Neurovision Research Institute (NNRI) to accelerate the translation of laboratory-based research into clinical trials for treatments and cures of retinal degenerative diseases. NNRI is a medical research institute that promotes cooperation and collaborations between academic researchers, government agencies, corporations and private foundations. NNRI is also negotiating royalties and licensing fees from drug discovery and commercialization of new therapies.Fundraising and Activities
The Foundation has more than 50 volunteer-led groups and chapters across the U.S. These volunteers raise funds, increase public awareness, and provide support to their communities.In addition to grants and corporate gifts, the Foundation hosts a series of events across the country, including VisionWalk, Dining in the Dark, and a series of galas and dinners including the For the Love of Sight Dinner held in Washington, D.C., the Visionary Award Dinner in Baltimore, Maryland, and the Humanitarian Award Dinner in New York City.
VisionWalk
VisionWalk is the national signature fundraising event of the Foundation Fighting Blindness. Since its inception in the Spring of 2006, the program has raised over $7 million to fund sight-saving research. As promising treatments move into critical human studies, the need for research funding is greater than ever before.Race to Cure Blindness
Race to Cure Blindness is a fundraising program where participants utilize a marathon, triathlon, bike race, or other racing event as a platform to raise money for the Foundation Fighting Blindness.If you would like to use your racing effort to raise money for the Foundation Fighting Blindness, the Race to Cure Blindness is an excellent way to make your participation more meaningful and to motivate you when the going gets tough.
Your participation will help raise vital funds that will support the Foundation's urgent mission to drive the research that will provide preventions, treatments, and cures for the entire spectrum of retinal degenerative diseases.
This program unites people participating in races throughout the country with a very worthy cause furthering the mission of the Foundation Fighting Blindness!
Grants
The Foundation currently funds 151 grants at 80 prominent research institutions and eye hospitals in the U.S. and around the world.See also
- Retinitis PigmentosaRetinitis pigmentosaRetinitis pigmentosa is a group of genetic eye conditions that leads to incurable blindness. In the progression of symptoms for RP, night blindness generally precedes tunnel vision by years or even decades. Many people with RP do not become legally blind until their 40s or 50s and retain some...
- Macular DegenerationMacular degenerationAge-related macular degeneration is a medical condition which usually affects older adults and results in a loss of vision in the center of the visual field because of damage to the retina. It occurs in “dry” and “wet” forms. It is a major cause of blindness and visual impairment in older adults...
- Usher SyndromeUsher syndromeUsher syndrome is a relatively rare genetic disorder that is a leading cause of deafblindness and that is associated with a mutation in any one of 10 genes. Other names for Usher syndrome include Hallgren syndrome, Usher-Hallgren syndrome, rp-dysacusis syndrome and dystrophia retinae dysacusis...
- Stargardt's diseaseStargardt's diseaseStargardt disease, or fundus flavimaculatus, is an inherited juvenile macular degeneration that causes progressive vision loss usually to the point of legal blindness...
- Leber's congenital amaurosisLeber's congenital amaurosisLeber's congenital amaurosis is a rare inherited eye disease that appears at birth or in the first few months of life, and affects around 1 in 80,000 of the population.It was first described by Theodor Leber in the 19th century...