USA Aniridia Network

“Jill a. Nerby christopher j. Albrecht ceo/director director family relationship - cousins”

“The chief executive officer/director reviews the form 990 for accuracy and the certified public accountant board member reviews the form 990 for reasonableness prior to filing. In years where the board of directors require an independent review of the organization's financial transactions, a copy of the review report and related statements is provided to all board members before the form 990 is finalized and filed.”

“On an annual basis, the board members are required to complete and sign a confidentiality, conflict of interest and nondisclosure policy. The policy requires members to disclose any employment or financial interest to the organization that the board member and/or the board member's family holds that may impact his or her ability to remain independent and objective.”

“Aniridia foundation international provides copies of the form 990 or additional information such as the conflict of interest policy upon written request.”

“To help those born with low vision due to aniridia through educational, research and public awareness programs and medical conferences. Because aniridia is comprised of conditions found commonly in the general population such as glaucoma, corneal scarring, cataracts and blindness, our research into aniridia, and these conditions, may ultimately also help others with these same conditions in the general public. We also seek to delve deeper into the pax 6 gene effect on the other areas of the body outside the eye as we are now finding issues such as diabetes, glucose intolerance, obesity, autism spectrum disorders, learning disabilities, and other issues under investigation in this population of people with pax 6 defects. The international aniridia medical registry (iamr) and gene bank is a good example. These samples and data are being collected and used to aide research in not only aniridia but also glaucoma. Our mission incorporates the idea that by providing researchers the opportunity for educational information or knowledge via our medical and scientific boards, a detailed data collection system and access to a bank of dna samples from those united by aniridia, true progress could be possible in a more timely fashion. Public awareness and support programs assist the family affected emotionally and help with how their lives interact with the public and medical community.”

“With this genetic birth defect. Children born with this must live their lives into adulthood with low vision, blindness and medical conditions such as insulin resistance, autism spectrum disorders, etc. Which requires special lifelong support to deal with medical, daily living and social issues. The conference provides important support opportunities for those affected to meet and share with others who know what they are living with daily. New parents seek support for the unknown and find comfort and advise in seeing/interacting with those living their lives as adults with aniridia syndrome. Because this is a multi-dimensional disease it affects the eyes as well as the body systemically leading to sometimes serious medical condtiions. Support both financially via our hope fund (helping other people) and emotionally via various avenues are imperative as raising a child and/or living with a disabiltiy can not only be financially but emotionally draining. Since this is a genetic syndrome it is passed into each generation with 50 percent change with each pregnancy. Therefore, a parent could have aniridia syndrome and then have mulitple children affected also which exemplifies the financial and emotional burden. Topic books, "eye on aniridia" newsletters, website adn private support areas help with our educational and support for those affected. Peer counseling by those with educational backgrounds in low vision, edcuation, psychology and also living with aniridia are invaluable assets to the children/adults with aniridia syndrome and their families/parents. We try to design our programs to be multi-purpose to achieve the most benefit for the funding. For example, our conferences explained above address benefits to those born with aniridia syndrome through education, support, free exams by opthalmologists and voluntary data collection to advance research.”

“Key people working with the aniridia syndrome population and is an accomplished author promoting aniridia syndrome.”