Summary
Organization name
Aniridia Foundation International
Tax id (EIN)
04-3599174
Categories
Children & Family
Address
PO Box 41Manitowish Waters, WI 54545
Helping children and adults born with a genetic syndrome involving low vision & serious medical issues also found in the general population.
Aniridia is a genetic condition in which infants are born with low vision or blindness due to underdeveloped eye structures and there is no cure...yet. Those affected also either at birth or early in life usually develop conditions such as hard to treat glaucoma, corneal scarring, cataracts, loss of further vision, retinal problems, diabetes, weight issues and in some cases more serious medical issues such as Wilms tumor, a cancerous tumor of the kidney before age 8, autism spectrum disorders and retardation. While these conditions are somewhat common in the general population, it is uncommon to have most of these in one person. However, our research program gathers data on ALL aspects of these conditions in which many people in the getneral population face. It is our hope that while helping those with aniridia, we will also help advance research for the conditions many people have like glaucoma, diabetes, obesity and corneal disease to name a few.
1) To provide the LATEST MEDICAL / RESEARCH information and EDUCATION so that they may make wise medical decisions and continue their independence despite their vision. Provide information and research data to the medical and research community so that they may join in our fight against blindness. The AFI International Aniridia Medical Registry and Gene Bank is the main project of our research.
2) To SUPPORT the low vision / blind people born with aniridia and their families who struggle emotionally and financially due to having aniridia. To assist them in accomplishing their dreams and remain independent, self sufficient and a productive member of society.
3) To help fund RESEARCH especially the AFI created program The AFI International Aniridia Medical Registry and Gene Bank which collects DNA samples, comphrehensive medical questionaires, and clinical photographs to add knowledge to physicians and advance research. Our international faculty of AFI Medical Advisory and Scientific Boards assist us with this program. We also help fund research and patient care services as funds allow and look forward to raising funds to expand our efforts to stop this genetic condition from continuing into future generations..
4) To further PUBLIC AWARENESS about all the conditions that make up aniridia, and the misconceptions of people who are blind or low vision.
Aniridia is a multi faceted condition made up of several medical and ophthalmic issues due to the fact that the gene responsible for aniridia is a gene which is responsible for development of the eyes, kidneys, pancreas and forebrain, thus many issues can arise. In fact, many years ago when they named this condition, the most noticeable thing was that the child born with aniridia had "no iris" (the colored part of the eye). However, today we know that having no iris is the LEAST of the problems and that some children may actually have a mild case and have an iris. If named today it would be called something else as a person with aniridia can have multiple issues to deal with. Glaucoma, corneal scarring / disease, cataracts, low vision / blindness, diabetes and autism spectrum disorders are somewhat common in the general population but what makes aniridia special is that one child can have many, if not all, of these issues and live life with them as there is no cure. There is hope...there are new treatments and research beginning to make life easier. Since this is a genetic condition with each infant born with sporadic (no family history) aniridia then begins a family line of inheritance of 50% with each pregnancy. It is our hope that we can assist research for the children of today and tomorrow so that one day soon, we can stop the inheritance into future generations.
Support means alot to those born with low vision and who lose vision throughout their life due to glaucoma and corneal scarring. While families provide support, there is a special bond when those affected have the support of their peers who truly understand what they go through on a daily basis. Your generous support of AFI and and our programs also mean alot to them as we are smaller than most nationwide non profits and not as prevalent such as heart disease, however, your support shows them others care about them and their future.
Take our Hands,
Walk with Us,
Share our Dreams,
and Help Us Make a Miracle!
Support means alot to those born with low vision and who lose vision throughout their life due to glaucoma and corneal scarring. While families provide support, there is a special bond when those affected have the support of their peers who truly understand what they go through on a daily basis. Your generous support of AFI and and our programs also mean alot to them as we are smaller than most nationwide non profits and not as prevalent such as heart disease, however, your support shows them others care about them and their future.
Take our Hands,
Walk with Us,
Share our Dreams,
and Help Us Make a Miracle!
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Organization Data
Manitowish Waters, WI 54545