Aniridia Foundation International
This organization has already been registered
Someone in your organization has already registered and setup an account. would you like to join their team?Profile owner : j********y@a******a.n*t
Mission Statement
Aniridia Foundation International (AFI) is a 501(c)3 nonprofit organization whose mission is to help people born with low vision or blindness due to a genetic defect causing Aniridia Syndrome. AFI helps children and adults who are affected and their families through research, educational resources, and community support. Through these initiatives, AFI is also working toward better treatments or therapies and a cure for Aniridia Syndrome. Aniridia Syndrome is a genetic disorder affecting the development and maintenance of the eyes and other parts of the body. Most born with Aniridia Syndrome have visual acuities between low vision and legal blindness. It is passed into each successive generation with a 50 percent chance with each pregnancy (autosomal dominant inheritance). Therefore some families have multiple family members and multiple generations affected. This is one reason AFI continues to help with important research and work passionately towards better treatments to retain vision and a cure.
About This Cause
More about Aniridia Syndrome and the Aniridia Foundation International Mission Because of the genetic component, the visual acuities among those with Aniridia Syndrome may vary according to the level of development of their eye structures like the optic nerve and retina. Most children and adults born with Aniridia Syndrome have visual acuities between low vision and legal blindness or worse. The majority have no iris development (the colored part of the eye) and have multiple challenging eye conditions which can cause further vision loss including: difficult-to-treat glaucoma, corneal scarring, childhood cataracts, and retinal issues, that can appear anytime between birth through young adulthood. These conditions individually are common in the general population; however, it is uncommon to have many occur in one person. Through AFI’s help with research, the scientific community is now realizing that the genetics causing this syndrome affects more than the eyes. It also plays an important role in the development and maintenance of the pancreas, central nervous system, olfactory system, and parts of the brain. More research is needed in the areas of insulin resistance and diabetes, autism spectrum disorders, metabolism and endocrinology. Mission: Research Aniridia Foundation International helps research in two ways: funding scientists conducting Aniridia Syndrome research and through our own research program, The Aniridia Foundation International Medical Registry. The AFI Medical Registry The AFI Medical Registry securely collects medical data from people with Aniridia Syndrome. This de-identified data has been used by medical professionals and researchers for many peer-reviewed medical and scientific papers written over the last decade. These new findings have led to a better understanding of Aniridia Syndrome. The goal of these and future studies is to work towards better treatments and therapies, eliminating the inheritance into future generations, and the cure of Aniridia Syndrome and the conditions associated with it. Also, Aniridia Foundation International works closely with researchers leading aniridia research and physicians with successful experience in aniridia care. AFI Medical Registry registrants are often invited first to participate in Aniridia Syndrome research studies (both paid and unpaid) and in clinical trials. Since we are learning new things so rapidly, the AFI Medical Registry is continually improving its ways of data collection. Some examples are: participating in the annually-updated medical survey, medical information sent by doctors at your request, taking photographs and sharing genetic testing results. An additional benefit for AFI members participating in the AFI Medical Registry is funding for genetic testing for those who cannot afford it. Obtaining personal genetic data is important to know to help determine if a person is a candidate for future therapies. For those who already had genetic testing, the results can also be submitted to the AFI Medical Registry. This important genetic data helps researchers learn more about the genotypic/phenotypic relationship (comparing the genetic sequence and the physical conditions present in a person with Aniridia Syndrome). Mission: Educational Resources The Aniridia Foundation International “Make a Miracle” conferences Our most successful educational program, the “Make a Miracle” conferences, has been in existence since our beginning in 2002. These unique conferences bring together physicians, researchers, medical and research grad students, those affected and their families to learn the latest information about Aniridia Syndrome during several days of informational sessions. Also, professional sessions allow physicians and researchers to come together and brainstorm, increasing the bidirectional learning between research lab and clinic. In addition to the sessions, there are special events where families can share their stories about living with Aniridia Syndrome with others who truly understand and address their social and support needs. Lasting friendships are made during these times of personal connection. While the parents are learning from the professionals, children and teens have a program all their own, including fun activities, age-appropriate sessions, and time to create friendships. The conferences are also a time to participate in data collection for the AFI Medical Registry and new research studies. In appreciation for helping others and themselves through these data collections, some conferences offer the opportunity to be seen in the “See the Experts” clinic at no charge. Other Educational Resources Aniridia Foundation International shares the latest information with their members and donors through AFI’s Eye on Aniridia newsletter. These newsletters contain information about research and medical advancements in Aniridia Syndrome, fundraising events and opportunities, as well as personal stories. Issues are sent to those with current contact information registered with AFI. A wonderful book entitled Aniridia and WAGR Syndrome: A Guide for Patients and Their Families by Jill A. Nerby and Jessica J. Otis is highly recommended reading by many. This book has medical chapters written by AFI Medical and Scientific Board professionals in a non-technical way for better understanding of the many facets of Aniridia Syndrome. Other chapters include information about resources and support for patients and their families, real-life stories of patient and family experiences, suggestive teaching for the low vision child, and Aniridia Foundation International’s mission. This book can be ordered from the publisher, Oxford University Press, or worldwide from sites like Amazon or Barnes and Noble. For physicians treating Aniridia Syndrome, there is a technical medical and scientific textbook published by Springer International Publishing titled Aniridia: Recent Developments in Scientific and Clinical Research. The book highlights topics such as: “Current Research Dedicated To The Ocular Defects Of Aniridia,” “The Latest Surgical Approaches” and “Special Attention To Pediatric Patients.” Included is a chapter authored by AFI Director Jill Nerby, B.S. Mission: Lifelong Support There is no better feeling than to be truly understood. Aniridia Foundation International provides support through peer and professional counseling with those living with Aniridia Syndrome and their family members. Sharing with others and asking questions is an important aspect for those living with Aniridia Syndrome. There are many challenges and some disappointments in the "aniridia life journey" so support is imperative. Therefore, by request, AFI has created a private members-only area to meet others with Aniridia Syndrome and their family members to share personal experiences, ask questions, read the latest informational articles and more. There will also be topic chat times for children, teens and adults. USA Aniridia Network and Aniridia Foundation International History In 2001, we began as USA Aniridia Network. By 2006, we had grown from 20 families to over 100, created the AFI Medical Registry to assist with research and had been asked by many international physicians if their patients could contribute to the data and receive information. Back then, there were not really any international organizations for them and no support. In addition, a new group had a similar name which caused confusion and was not giving correct information. So that we were not confused with that site anymore, we filed to do business as "Aniridia Foundation International" with specific plans. While out of compassion, we provide information about their genetic condition, new treatments, etc. to people outside of the USA, ALL donations would ONLY be used in the USA, just as all programs likewise would be done in the USA. Most people know us as Aniridia Foundation International (AFI) since the name USA Aniridia Network was changed in 2007 to Aniridia Foundation International (AFI). Leading the Way - we need your support too! From the beginning in 2002, we have relied on a group of volunteers to run AFI so overhead is minimal and every donation is used for our mission. Funding needs for research, genetic testing, providing support, and hosting the “Make a Miracle” conferences continue to grow as more people request help from Aniridia Foundation International. These initiatives are very important in working towards better therapies, genetic breakthroughs and a cure for Aniridia Syndrome. Therefore, we ask you to....Take our Hands, Walk with Us, Share our Dreams and Help us Make a Miracle! Thank you for your support to help the low vision and blind individuals living with this genetic syndrome.