Aniridia Foundation International Medical Registry
The research of aniridia syndrome is important to us. We have created a Medical Registry where we are currently collecting data on aniridia and its associated or suspected associated conditions from all people born with aniridia and in some cases, their blood relatives. Both aniridia and glaucoma, which is responsible for vision loss in people with aniridia and many others, will be studied with the data through the registry and gene bank.
Our present research goal is to continue seeking additional funding so that we may help fund new aniridia research and its associated conditions that affect those with aniridia and others in the general population that live with the same conditions. Some of these conditions are: glaucoma, corneal scarring, nystagmus, cataracts, diabetes, Autism, and the genetics involved in each.
Your donations to the AFI Medical Registry will help advance research and treatments for everyone who lives with any of these conditions.
Helping People and Better Health Care
OPTIC program (Ophthalmic PaTient Immunosuppressant Clinic)
As the condition aniridia is a subset of the low vision and blind community, AFI is empathetic with others who suffer the same conditions as those with aniridia experience. At the inception of this program, AFI was the original and sole granting organization to assist Dr. Edward J. Holland, an AFI board member, in starting the OPTIC program, which was run out of his office. To date, AFI has granted $70,000 to his office in the name of CEI Physicians enabling Dr. Holland’s patients to better health care monitoring through the OPTIC program team of doctors. This program benefits those with aniridia, as well as others with other low vision eye conditions such as: Stevens-Johnson Syndrome, chemical or thermal burns to the eyes, long term contact lens damage, and other corneal dystrophy conditions. Patients with other eye conditions, like aniridia, try to have their sight restored with the KLAL transplant. Due to the strong immunosuppressant medications necessary after the transplant, close monitoring after a KLAL transplant is very important in retaining sight for all of these conditions. It is also important to keep them educated about their medications and maintain their overall health.
Although the patient data provided to us by the OPTIC coordinator shows long term that aniridia patients are a smaller percentage of the program than in the beginning, we remain open to future grant requests for partial funding.
The HOPE Fund (Helping Other PEople)
The primary focus of this fund is to help offset costs for families who want and need to attend our medical conferences. Since aniridia is genetic, sometimes multiple people in a family have low vision or blindness which can put a strain on the finances with medical costs and low vision devices. Often, these families or individuals are not able to afford to come, learn, or be seen by these world renowned doctors and researchers. However, it is this economic level that needs it most because they often do not have physicians that are knowledgeable about and experienced in treating people with aniridia. They also need the opportunity to have the education they need to make good medical choices. Our medical conferences have consistently been valued highly among those who have attended as making a great difference in their lives both educationally and socially. Individuals or families wishing to attend must furnish financial proof and will be selected as funds allow.
CUDDLES and WE CARE programs
This program focuses on the emotional support for children (Cuddles) and teens/adults (We Care). In Cuddles, stuffed teddy bears or animals with personalized t-shirts are sent to infants and children who are either going through surgery, transplants, chemotherapy or dealing with stressful situations. For example, these Cuddles bears have been used in a play therapy way to help children overcome the fear of eye examinations or surgery when parents and the doctor examine the bear’s eyes first or practices preparations for surgery with the bear.
Teenagers and adults may also experience fear, need someone to talk to, or just feel good that people are thinking of them at this time. For the We Care program, when a person is referred, we send out an age appropriate "thinking of you" item. These items are not expensive, but make the world of difference in the minds of those who feel alone at this time.
Our Medical Conferences
Through our medical conferences and with the help of our Medical Advisory and Scientific Boards, we bring in top physicians and researchers to speak on aniridia and its associated conditions, the latest research, new treatments, and topics to enrich the lives of those with aniridia and their families.
Because aniridia is a subset of the low vision and blind population, we also have general low vision and blindness topics to help people with other eye conditions maintain a quality of life.
Awareness in the Medical Community
Each year, Aniridia Foundation International (AFI) exhibits at several medical conferences put on by such organizations as the American Academy of Ophthalmology (AAO), American Academy of Pediatrics (AAP), World Cornea Congress (WCC), American Society of Cataract and Refractive Surgery (ASCRS), and the Eye Bank Association of America. Our presence at these distinguished medical conferences has raised the awareness of aniridia, created interest in research opportunities, helped guide physicians in treating patients with aniridia, and allowed them to publicize to their patients that there is an organization that can help them. These conferences are somewhat costly; however, the benefits received are invaluable and continually growing.
Our goals to educate and create awareness about aniridia and its associated conditions such as glaucoma, corneal scarring, cataracts, low vision, and blindness lead us to create brochures to more effectively reach those throughout the world and those without internet access. Printing and mailing costs escalate as our membership and awareness goals grow. We have a committee of volunteers that have translated them into Spanish for those who can not read English. You may view or download some of these brochures below.
Our quarterly newsletter is entitled "Eye on Aniridia" and through generous donations are free to members which allow every economic level to be educated, supported, and feel like they belong. News on aniridia and its associated conditions, research and opportunities to participate, helpful aids and tips, conferences, and fundraisers are all included. Some of the regular columns are "Meet Our Members", "Parents’ Pride", and "From the Director".
Our bi-annual newsletter for physicians and researchers is called "Aniridia InSight" and is distributed via their private area, The Knowledge Transfer Center. The articles are written by medical and research professionals for physicians and researchers populations desiring to learn more about aniridia, its associated conditions, treatments, and research. This is an excellent way to keep the clinical community and the research community aware of latest developments and ways they can help each other.