Our Programs
The Programs we fund are:
Education Programs
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 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 was an organization who could help them. These conferences are somewhat costly, however, the benefits received are invaluable and continually growing.
EDUCATIONAL BROCHURES
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.
NEWSLETTERS
Our quarterly newsletter for members and the public is called Eye on Aniridia and through generous donations are free which allows 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, fundraisers are all included. Some of the regular columns are Meet our Member, Parents Pride, and Ask Doug for employment topics.
Our bi-annual newsletter for physicians and researchers is called Aniridia InSight and is distributed via mail and email to these professionals around the world. The articles are written by medical and research professionals for physicians and researcher 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.
Helping People and Better Health Care
OPTIC program (Ophthalmic PaTient Immunosuppression Clinic)
Being a subset of the low vision and blind community and empathetic with others who suffer as we do, we have pledged to fund better health care monitoring through our OPTIC program. This important program benefits those with Aniridia, as well as our fellow people with other low vision eye conditions such as STEVENS-JOHNSON Syndrome, Chemical and Thermal Burns to the eyes, and other corneal dystrophy conditions. These other eye conditions, like aniridia, can have their sight restored with the same transplant that people with aniridia are having done and close monitoring after KLAL transplant is very important in retaining sight for all of these conditions. It is also important in keeping them educated about their medications and healthy.
This program will be the pilot for our plans to create other clinics at other various institutions where the KLAL transplant is being done and doctors are trained in this specific procedure and immunosuppression protocol. Timeline projections will depend on funding received in the coming years.
The OPTIC program Coordinator will also help collect data for one of our research programs, the International Aniridia Registry. The beauty of these programs being complimentary and helpful to each other is that it will serve both needs of research and patient care at the same time.
The HOPE Fund (Helping Other PEople)
This fund's primary focus is to help offset costs for needy 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 renown doctors and researchers. However, it is this economic level that need 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 bears 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.
RESEARCH
International Aniridia Registry and Gene Bank
The research of Aniridia is also important to us. We have created an International Aniridia Registry where we are currently collecting data on aniridia AND its associated or suspected associated conditions from all people born with aniridia. Phase 2 of this project has us partnering with the Hamilton Eye Institute to create a gene bank that will help with research and education of the medical community through clinical photographs, DNA and tissue samples. 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 obtain enough funding so that we may help fund new Aniridia research and its conditions that affect people with aniridia such as: Glaucoma, Corneal Scarring, Nystagmus, Cataracts, and the genetics involved in each.
Other Research
We are committed to help with research on aniridia and its associated conditions such as: Glaucoma, Corneal Scarring, Nystagmus, Cataracts, and the genetics involved in each through participating in research projects and providing our medical data. Although we have donated to various research projects, we hope to facilitate more funding to fund major research in the future through public donations, grants and our yearly fundraisers.
BROCHURES
Here are some of our brochures that you can download. Please share with your doctors, family, and friends.
