Overview of AFI, Mission, Board of Directors About Aniridia Foundation International

HomeAbout AFILatest NewsEventsResearch InitiativesAFI ProgramsJoin AFIWays To Give

Jill Nerby
Director and Founder of
Aniridia Foundation International

Congenital Eye Disorder Mgr.
Dept. of Ophthalmology
University of Virginia 
School of Medicine 
Charlottesville, VA
Overview
Aniridia Foundation International is a 501(c)3 non-profit charitable organization dedicated to assisting those with low vision or blindness due to the genetic blinding eye disease Aniridia. Our members consist of those with aniridia, their families, physicians, researchers, and teachers.

Aniridia Foundation International members have united together because we must stop this genetic disease from passing from one generation to the next, and make a difference in the lives of those who presently live with it daily. There is currently no cure, but we hope that with our diligence and passion that we will see one in our lifetime.

A child who is born with aniridia syndrome (other eye or medical conditions) has a life of challenges. Most children born with aniridia syndrome have visual acuities around 20/200 and are considered legally blind. This is because from what we have discovered so far, the gene responsible for aniridia syndrome (PAX 6) is responsible for the development and cell maintenance of the eyes, kidneys, pancreas and areas of the brain. The inner structures of the eye such as the retina, optic nerve and iris are not fully developed. These children must face throughout their life and at any age the possibility of losing more vision due to the associated eye conditions of glaucoma, cataracts, corneal scarring, retinal detachments and Aniridia Fibrosis syndrome (AFS). Possible medical conditions include glucose intolerance, diabetes, obesity, and metabolic problems. In rare cases, one third of those with sporadic aniridia (neither parent has it) will have WAGR Syndrome which means in most cases, they will have one or more of these conditions in addition to having aniridia: Wilms tumor (cancerous tumor of the kidney usually before age 8), Genitourinary Abnormalities, Gonadblastoma and various levels of retardation or learning disabilities.

It is our hope that one day through a collaboration of the public, philanthropic and corporate donors, medical and research communities together with our “team efforts”, Aniridia syndrome and its associated conditions will be a thing of the past. We appreciate your support and involvement and ask that you Take our Hands, Walk with Us, Share our Dreams, and Help Us Make a Miracle!

AFI Caveat: We are providing information to help those affected with Aniridia Syndrome, their families, the medical community and other interested individuals as an educational tool. This is not to be used in place of seeing a doctor or specialist. In our Members Only Area, though discussions on specific problems are permissible and expected, remember no posting there shall constitute professional health care or medical advice. AFI is a 501(c)3 non-profit charitable organization. We do have a Medical Advisory and Scientific Board consisting of an international faculty of ophthalmologists, physicians, researchers and vision professionals to keep our information correct and timely. Aniridia Foundation International is involved in self-help, while trying to promote research, peer support and education, among other goals contained in its mission statement.
Peter A. Netland, MD, PhD
Vernah Scott Moyston 
Professor and Chair
Department of Ophthalmology
University of Virginia 
School of Medicine
Charlottesville, VA 

Dr. Netland in the News
Edward J. Holland, MD
Professor of Ophthalmology
University of Cincinnati
Director of Cornea Services
Cincinnati Eye Institute
Cincinnati, Ohio 
Christopher J. Albrecht, CPA
Director, Finance and Business Development
Principal Owner, Ammon & Albrecht 

Mr. Albrecht in the News
About Aniridia Foundation International
Our Mission
Aniridia Foundation International (AFI), along with its medical and research professionals seek to find a cure for aniridia syndrome so that this congenital eye disorder does not continue to be inherited into each generation.

AFI's research program, the International Medical Registry seeks to assist in the advancement of research and improved treatments of the conditions which “make up” the multi-faceted syndrome. More globally important, since these conditions are also common in the general population, it could mean any research advancements will help many more people such as those affected in the general population, as well as, those with aniridia syndrome. We believe that this AFI research program WILL continue to lead to improved understanding, better patient care, and lead us closer to a cure.

While research is important, helping children / adults born and living with this congenital disorder is also very important. Aniridia Foundation International’s educational and support programs, such as the biennial AFI “Make a Miracle” conference, which involves medical, scientific and support aspects, has been stated to be “life changing for individuals and families. It has been remarked to be “a one of kind meeting where the researchers, physicians and those affected work the problem together”. It accomplishes just one of our goals is to assist in providing the information needed to allow them to make sound medical decisions about their own health care choices and provide the emotional support so that it will enable them to have a healthy, independent life.

Through our educational projects, medical meeting exhibitions and fundraisers, AFI seeks to promote awareness among the public and medical community and to dispel misconceptions about people with disabilities such as aniridia syndrome.

This genetic congenital disorder is made up of multiple conditions, also present in the general population and therefore, it is our goal to educate others about this disorder and how we can work together to help others that live with these same conditions making up aniridia syndrome.

AFI was created to unite people with aniridia, their families, physicians, researchers and teachers to work together towards these goals.

NOTE: Aniridia Foundation International (AFI) is a 501(c)3 nonprofit organization helping those born with low vision and blindness due to the genetic eye and medical condition aniridia. This condition is caused by a defect in the PAX 6 gene which is responsible for development of the eyes, kidney, pancreas, and the brain. Hard to control glaucoma, cataracts, corneal scarring / disease, low vision / blindness, retinal detachments, diabetes, obesity and autism spectrum disorders are all conditions found commonly amongst different people in the general population. The difference is that a child / adult with aniridia may be born or live with several of these conditions as there is no cure ... yet. Please support AFI and Help Us Make a Miracle for those affected.

AFI Medical and Scientific Boards
Aniridia Foundation International carefully invites well respected international physicians and researchers to join our Medical and Scientific Advisory Boards. These physicians and researchers have extensive experience in clinical care of aniridia syndrome, the genetics related to it, and are leaders respected by their peers in their subspecialty areas. They assist AFI in keeping our information current and correct. They dedicate their time and play a big part in our "Make a Miracle" conferences. We are very appreciative that they have volunteered to be part of our team working to improve the lives of those affected and make a difference for the generations to come.

Physicians and researchers working on any of the conditions which make up aniridia syndrome or the PAX 6 gene who wishes to become an active member in Aniridia Foundation International and be considered for the Medical and Scientific Advisory Board, please contact us.