USA Aniridia Network

“Name: university of delaware address: university of delaware newark, de 19716 cash contribution: 24,000”

“Expenses supplies 141 software 2,040 website & internet 368 website & internet 6,188 travel expense 176 travel expense 186 insurance expense 823 license & annual fees 110 telephone 1,088 credit card processing 1,271 non-investment depreciation 26 total 12,417”

“Unrealized gain on investments 729 unrealized loss on stocks 0”

“12,311 12,311 less accumulated depreciation 12,260 12,287 6,075 6,075 less accumulated amortization 6,075 6,075 total 51 24”

“Accounts payable and accrued expenses 4,308 2,891”

“To provide educational and support programs to those born with a genetic disorder called aniridia syndrome, which due to underdeveloped eye structures renders the child to live life with low vision or blindness and other medical conditions. The medical conferences provides all aspects: education, critical support and opportunities to be seen by expert ophthalmologists who volunteer their time. It also gives physicians and researchers quality time to discuss and brainstorm in efforts to work together. Aniridia foundation international (afi) also funds aniridia research and provides important data to researchers in hopes that advancing research will improve their quality of life until there is a cure. Aniridia syndrome is comprised of conditions which can cause further loss of vision and medical conditions anytime from birth onward. Those with this genetic disorder struggle with difficult to control glaucoma, childhood cataracts, corneal scarring, retinal detachments or aniridia fibrosis syndrome. Medically, some live with metabolism issues, insulin resistance / diabetes, and autism spectrum disorders as the gene is responsible for development and maintenance of the eyes, the pancreas, central nervous system, parts of the brain, the olfactory system and possibly more. While these conditions are also found in the general population, it is uncommon for most if not all of them to be found in one single child or adult. Afi seeks to delve more into this research area with the help of our medical and scientific advisory council, through the reserach program of the afi medical registry, to continue to fund various research areas related to aniridia syndrome and co-fund research with other vision organizations.”

“Afi "make a miracle" conferences, educational and support programs: the afi "make a miracle" educational conferences are unique. For those with aniridia syndrome, we bring in top physicians and researchers to present to the families and individuals with aniridia the latest information about their genetic disorder. These professionals also have meetings of their own to discuss, share and brainstorm as they typically attend their own medical or scientific meetings and do not interact physically. This conference gives them that opportunity. After the medical and scientific presentations end there is support, networking and discussion groups for those affected. At some of the conferences, we provide a free "see the experts" eye clinic in which various members of our afi medical advisory council volunteer their time to examine and provide critical knowledgeable care for those with aniridia syndrome. Over the years this has saved a many people's vision as their problems were not diagnosed or properly treated by their local doctors who were not aware of current aniridia syndrome issues. While the parents are listening to the professional's presentations, we have a child care and teen program whee they have fun, learn important coping skills and meet their peers who also have aniridia syndrome making life long friendships and support systems. Our parent support discussions are helpful because having a child or children with this inherited genetic disorder can be emotionally and financially draining. It always helps to have someone who has walked in your shoes there to understand. One of our newer programs is the chris albrecht hope fund. "hope" stands for helping other people, which is part of afi's mission to help those in need through various ways. The book "aniridia and wagr syndrome: a guide for patients and their families is one of the educational tools we offer to those wanting answers and hope. Along with a website, facebook and twitter presence, we will be opening a private discussion area so those affected can share more privately about their personal experiences or issues amongst themselves to find answers and support. Various volunteers offer special counseling from career based areas and those who have lived with aniridia themselves. Afi also helps those affected who are in need by paying for their genetic testing (pax6 sequencing) which can be very expensive even with insurance. This informaiton will become more important as the medical and research community move towards treatments and hopefully a cure through genetics. Knowing what your mutation related to aniridia is will benefit those we help and even more so in the future.”

“Professional and public awareness and learning afi collaborates with the medical and research community and spreads awarenesss: afi attends medical and scientific conferences such as american association of ophthlamology (aao), association of research and vision in ophthalmology (arvo) and other vision related meetings. The information gained at these meetings helps us keep our information current and the information provided to the medical or scientific attendees spreads awareness of this genetic syndrome and provides important information for their patients. The director / founder of afi is an internationally known invited guest speaker at medical, scientific and vision related meetings educating and promoting aniridia syndrome. She is an accomplished author on this genetic disorder and has created awareness through networking at these meetings.”

“Research afi has been a leader in facilitating aniridia syndrome research through two avenues: 1. Providing funding for various aniridia related research studies either as sole funders or as co-funders partnering with other vision organizations. 2. Collecting important human data from those with aniridia syndrome who voluntarily provide their data as they wish to help work towards better treatments to retain vision and a cure. The afi medical registry program accepts data from them and then it is de-identified before researchers receive this data. Researchers who wish to have this human data to compare to their animal models must go through a vetting process involving opinions from our medical and scientific advisors.”