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Volunteers are Needed!
January 2019

We are excited about offering Aniridia Foundation International members an opportunity to play a significant role in the future of your very successful nonprofit. We have several volunteer opportunities. Some can be done locally, and many can be performed anywhere. There are no paid employees in the AFI nor does the Executive Director receive a salary keeping our overhead minimal and our funds to be used wisely for our mission of education/awareness, research, and helping those with Aniridia Syndrome. 

Because we have experienced incredible growth over the last 15 years, the time has come when the AFI can no longer do all we want to accomplish with one Executive Director and some dedicated volunteers. Therefore, we are moving toward a more organized and focused volunteer program so that we may continue to use the majority of funding for programs, research, and critical support instead of hiring paid staff. 

Volunteer today by filling out our Volunteer Application Form (open through Acrobat Reader, not Mac preview) and send to [email protected]

This year we’re also working hard to plan another amazing members conference with great speakers and exciting activities for all. Our theme for this conference is “Aniridia Syndrome: Today & Tomorrow.” We have so many amazing ideas and tentative plans. Some pre-conference volunteer spots do not require you to attend. If you’d like to be a volunteer at the conference, fill out our Volunteer Application Form above.

Thank you for volunteering your time and talents to help us Make a Miracle!

Important Call to Action for All - Ask Congress to Support $1 Billion in Eye Research
September 2018

There is a very important bi-partisan bill coming to the House of Representatives, then to Congress and we need you to send your support of this bill to your local representatives. Share with friends, family and all to ask them to do the same for you.

The Eye Bonds Bill (aka H.R. 6421, Faster Treatments and Cures for Eye Diseases Act) will help vision research including syndromes and from birth vision issues - PLEASE read and see additional links below.

To email your congressman with a simple PLEASE SUPPORT H.R. 6421, Faster Treatments and Cures for Eye Diseases Act go to this link, put in your zip code and under the representative it will have an email icon or tell you how to contact them - even by phone.

Below is a link of the information followed by the actual document about it if you care to read it.

Sessions, Bishop Introduce ‘Eye-Bonds’ Bill To Unleash Scientific Innovation for Curing Blindness, Other Conditions

July 18, 2018 Press Release

WASHINGTON, DC — U.S. Congressman Pete Sessions (TX-32), Chairman of the House Committee on Rules, and Congressman Sanford D. Bishop, Jr. (GA-02), today introduced the Faster Treatments and Cures for Eye Diseases Act, H.R. 6421, a bipartisan bill to fund translational research and advance treatments and cures for blindness and other causes of severe vision impairment. Joining Congressmen Sessions and Bishop in cosponsoring the bill are Congressmen Gus Bilirakis (FL-12) and Fred Upton (MI-06).

In the U.S. there are more than 4 million adults and almost half-a-million children who are blind or have severely impaired vision. Causes of blindness and vision impairment are extremely diverse, ranging from conditions such as diabetic retinopathy, sickle-cell retinopathy, and age-related macular degeneration to injuries sustained during combat in defense of our nation. The Department of Veterans Affairs estimated in 2016 that over 1 million U.S. veterans are blind or visually impaired.

The Faster Treatments and Cures for Eye Diseases Act establishes a pilot program to create unique financial instruments called “Eye-Bonds.” These bonds would finance packages of loans to projects at small labs, universities, and other centers that can’t secure needed funding to help progress their research on treatments and cures for a wide range conditions and causes of severe vision impairment. Eye-Bonds would also mobilize as much as $1 billion, with virtually no taxpayer risk.

“Eye-Bonds would pioneer a new way to bring long-term, low-risk private investors into the biomedical arena that should cost the taxpayer virtually nothing,” said Congressman Sessions. Translational biomedical research advances the initial, basic research taxpayers fund into the cures and treatments private companies develop and patients need. However, this research often takes years of clinical trials and testing, leaving much of the research funded by the government on the shelf instead of out in the clinic. There are times when the private sector needs a push and there is a proper role for the government to play in making these critical advancements — this is one of those instances.”

“I have long been an advocate for those living with a disability, whether it is supporting their access to jobs and a productive and robust quality of life or supporting vital health research, and I know that it is essential that we find new ways to tackle old problems,” said Congressman Bishop. “We have had federally funded research sitting on the shelf, waiting for private investors to put it into practice, for far too long. But that has not happened. The Eye Bonds created by this legislation will give this research the boost it needs to help Americans. It has the potential to deliver new treatments for a range of conditions including macular degeneration, glaucoma, blindness caused by diabetes and sickle cell disease, and many others. And this is just the first step, as similar bonds could be created to support groundbreaking research into a host of other conditions such as cancer, Alzheimer’s and Parkinson's disease.”

“I’ve always been a strong proponent of finding cures and treatments for patients in need, and this bill will help do just that. This bipartisan effort will kick-start funding of innovative biomedical programs to help families and patients in my home state of Michigan, and across the country, suffering from vision impairment and blindness. I’m glad to join with my colleagues to introduce this exciting piece of legislation and look forward to our continued work together,” said Congressman Upton.

“As a visually impaired American, I am very proud to support this initiative because it reflects out-of-the box thinking about new ways to spur the development of cures and treatments that could potentially transform lives. This creative approach to funding innovative treatments to cure blindness holds great promise as a model that can be expanded to support the development of cures for other diseases, which is extremely exciting,” said Congressman Bilirakis.

Eye-Bonds will help to overcome what’s known as “The Valley of Death.” This refers to research that is never translated into treatments to help humans because of funding issues. This legislation would speed treatments across the valley and to the people who need them. The success of the Eye-Bonds will also provide a way to mobilize federal resources that can then be deployed for many other diseases and disabilities, such as cancer, Alzheimer’s, and Parkinson's disease. Many other countries already directly support translational research; the Eye-Bond approach can advance American competitiveness in this critical sector with very limited taxpayer risk.

The National Eye Institute, part of the National Institutes of Health, would be in charge of approving applications for Eye-Bond funding, a provision that ensures selected projects are top quality science and free of conflicts of interests. Taxpayers would be paid off before investors, a unique way to ensure that Eye-Bonds have virtually no cost to the federal deficit.

Eye-Bonds legislation has also received the support of the Foundation Fighting Blindness, National Alliance for Eye and Vision Research, and Blinded Veterans of America.

For actual bill here is the link.

Questions answered link by visually impaired person on this bill and for easy understanding of the legal info.
Aniridia Foundation International (AFI)'s Medical Registry has already been beneficial to many of our members. 
March 2020

We have worked with researchers and companies that we believe are assisting with research advancement, such as PTC Therapeutics. The AFI Medical Registry is a resource to collect human data about Aniridia Syndrome, and to identify potential subjects for research studies and the Ataluren clinical trial which started four years ago. We would like to share the PTC clinical trial report update with our aniridia community here.  

JOIN AFI here and be a part of our Medical Registry to help advance Aniridia Syndrome research and have the first opportunity to participate in research studies or clinical trials.