For some, your journey has just started, and others have a whole life full of experiences. Either way, you will be able to learn and share many things through Aniridia Foundation International.
For those that are looking to support a family member, friend, or if you are a philanthropist seeking a worthwhile cause to help children, the visually disabled or to support vision research, we welcome you to our website. Please contact us with any questions you may have.
In the past, there was little information and even less research about aniridia syndrome, mostly because ophthalmologists did not see many cases and are sometimes unfamiliar with its complexities. I felt the key to understanding this genetic congenital eye and medical disorder called aniridia syndrome, with the help of our Medical and Scientific Board physicians and researchers, was to unite those affected by this syndrome, their families, caring physicians, and determined researchers.
Since 2001, when we started as USA Aniridia Network and now doing business as (dba) Aniridia Foundation International (AFI), our team effort has made a real difference in the lives of many. We have made a difference by supporting families in the low vision community, educating and creating awareness about aniridia syndrome, and spearheading important research. But we still have a ways to go.
The core of AFI is centered on research-based projects such as our largest and most important project, the International Medical Registry and Gene Bank. In addition to helping those with aniridia syndrome, this program will advance research for various conditions which make up aniridia syndrome commonly found in the general population such as: glaucoma, retinal issues, corneal disease, low vision, diabetes, autism spectrum disorders, metabolic disorders and obesity. Having collaborations world-wide, the tools (our collection of data), and our AFI Medical and Scientific advisors assisting us we are able to make huge strides with your help. By working together we can accomplish many things!
You are not alone and we are here to help! We welcome you to join us and see how our "team" efforts can assist the low vision community, make advancements in research, improve patient care and one day, a cure.
Whether it is through your generous donations, your dedicated volunteering or participation in the research data collection, with your support you can Help Us Make that Miracle!
Jill Nerby, Founder, Aniridia Foundation International
Jill Nerby Appointed to Virginia State Rehabilitation Council
Jill Nerby was appointed by Virginia Governor Terry McAuliffe to be part of his administration by serving a three year term on the State Rehabilitation Council.
Click Here to Learn About Our 2013 Make A Miracle Conference!
Aniridia Foundation International announces the "DO GOOD Challenge"
Prizes for top 5 supporters raising the most by December 31, 2013
The holiday season begins our DO GOOD challenge to show the world that we can accomplish a lot by joining together to participate in the GOOD programs. This will raise awareness about aniridia syndrome and give you FREE ways to raise funds through everyday things you normally do anyway like eat, shop, search the internet and more. Businesses donate on your behalf as you shop, dine or search the internet with them. We will be updating our totals between now and Dec 31st to see how much impact working together proves to be. You can track your earned donations by registering first at www.goodsearch.com and designating Aniridia Foundation International as your cause. There are several GOOD programs found at www.goodsearch.com, however, the ones most used and have highest percentage donations are: GoodSwipe (shop or dine at top nationwide places), GoodShop (shop online, get great coupons), GoodDining (dine in or order out locally) and GoodSearch (search the internet). DO GOOD for those with visual impairments and aniridia syndrome.
Tell your friends and family to participate too. If they provide us your name, their earned donations go towards your total in your honor. (If you are participating, have them contact us via our website contact page, and state "I, (name) will participate in the Do Good challenge for Aniridia Foundation International and designate my earnings to go towards this family / individual's total. Name of family or individual.)
Use these instructions and easy templates for easy access to DailyGood.com on your computer, and to spread the word to family and friends about how they can also support AFI. Or download this fillable pdf letter template to send family and friends via mail or email to share with them in detail how they can DO GOOD for aniridia syndrome.
Aniridia Foundation International announces START Therapy trial location
This summer at the AFI Make A Miracle conference and social, Cheryl Gregory-Evans, PhD was a presenter. She presented detailed info on research done on a new therapy called START Therapy. START Therapy is a first-ever pharmaceutical topical therapy for patients with aniridia. It not only halted disease progression, but it also reversed corneal, lens, and retinal malformation defects and restored electrical and behavioral responses of the retina.
AFI is thrilled to announce that one of the clinical trial locations will be in the Department of Ophthalmology at UVa where Aniridia Foundation International is headquartered. If you would like to be seen at UVa, please contact Jill Nerby, Congenital Eye Disorder Manager and AFI Director at (434) 243-3357.