Dear Friends and Aniridia Community,

This month we find a somewhat "rare" occurrence known as "leap year" in which February 29th shows up only every 4 years.  Due to this unusual aspect, February 29th has been dubbed as "Rare Eye Disease" day. Here at Aniridia Foundation International (AFI) we have some interesting information to share with you, and hope that you will help us spread the word too.

Aniridia is now being recognized as a "syndrome" which is defined as a condition in which several clinically recognizable features are associated with one individual. Aniridia Syndrome is made up of multiple eye and medical conditions in which infants are born with, and go on to adulthood with, and also have a higher chance of developing these issues earlier in life than a person without the genetic error. The naming of "aniridia" is misleading in that "aniridia" literally means lack of iris (colored part of the eye); however, we now know today that this is the LEAST important aspect, as it does not CAUSE the LOSS of vision. If re-named today, it would be called something else to better reflect the seriousness of this multifaceted disorder.

Conditions making up Aniridia Syndrome are glaucoma, cataracts, corneal scarring, retinal issues, low vision, legal blindness, nystagmus, autism spectrum disorders, weight issues, and glucose intolerance or diabetes. These conditions are ALSO found COMMONLY in the general population.  So if these conditions that make up aniridia syndrome are SO COMMON, why are we telling you this on "Rare Eye Disease" day? To share the often misunderstood name of aniridia, to share the real understanding about it, and how you can help us make others understand the need for supporting the AFI research program, which will help those with aniridia syndrome AND many thousands of people in the general public who also experience these same conditions.

Yes, it is rare for a baby to be born with underdeveloped eyes, kidneys, pancreas, and brain structures due to a genetic defect. Yes, it is rare to have multiple eye and medical conditions in ONE PERSON.  However, as shown above, the clinically recognized conditions "making up" aniridia syndrome are NOT RARE. In fact, currently the incidence of glaucoma is 70 million people worldwide and is on the increase. Diseases affecting the cornea, such as corneal scarring experienced by those with aniridia and others in the general population, are a major cause of blindness worldwide (second only to cataracts in overall importance).

Currently there are

• 45 million individuals worldwide who are bilaterally (in one eye) blind
• Another 135 million that have severely impaired vision in both eyes.

The fact that there are 180 million people in the world today who are in some way severely visually disabled shows the need to advance research, improve patient care, and continue our mission in vision preservation and restoration.  With your support, Aniridia Foundation International's research program, its collaborations with researchers worldwide, and its integrated presence within the prestigious University of Virginia School of Medicine, Department of Ophthalmology promises to add to advances for many of these individuals, as well as, the aniridia community in the coming years.

To give a TAX DEDUCTIBLE** gift of hope click here or mail to:

Those born with aniridia, children and adults, strive to appreciate all life has to offer and hope for the day that vision loss will be a problem of the past. With your continued support, donations, and awareness / fundraising events, we can continue to make giant strides. On behalf of all those born with aniridia syndrome we ask you to  "Take our hands, Walk with Us, Share our Dreams, and Help Us Make a Miracle!" 

*** Help Us Spread Awareness about Aniridia and PAX 6 – There is POWER in numbers...Help us provide the power to move forward with our mission at a faster pace by participating in the POWER of 6 campaign. If you or someone you know would like to receive an aniridia awareness letter with simulation glasses to allow people to see the world through the eyes of someone with low vision due to the corneal issues, please email us (info@aniridia.net) or send your name, address, and a list of those you would like us to share this with and their addresses.

Aniridia Foundation International is pleased to announce their support and collaboration with Aniridia Norway for the 2012 Aniridia conference in Oslo, Norway. We were very honored to have our international colleagues and friends at our July 2011 "Make a Miracle" medical and scientific conference. We hope that you will be able to attend the 2012 international aniridia conference for more great information being shared by our community. In 2010, I was an invited guest speaker for the last medical and scientific conference in Oslo and it was truly an amazing experience! Great exchange of information between colleagues, beautiful country and warm, welcoming hosts. I encourage all of you to try and make it to Oslo June 8-10th. I have again been invited to speak...so hope to see you there! For more information please go to www.aniridiaconference.org

For those that can not make the trip, the Aniridia Foundation International 2013 "Make a Miracle" conference will take place in Charlottesville, Virginia July 17th - 21st, 2013. Put this on your calendar, get your vacation time request in and make plans to attend with the whole family. Events for kids, teens and college age in addition to the medical and scientific presentations. Committees are being formed and events planned. If you are interested in helping and have the time to dedicate, please contact our office at 434-243-3357 or email info@aniridia.net with the subject line of Conference Volunteer. Please list your interests, skills and hours per month you are able to dedicate to volunteering.

United and Working Together....We CAN Make a Miracle!

We've Moved!

Aniridia Foundation International has a new office! AFI has had a wonderful opportunity given to them and has been invited to have an office at the University of Virginia School of Medicine in the Department of Ophthalmology. CLICK HERE to see our new office address.

The book Aniridia and WAGR Syndrome: A Guide for Patients and Families by Jill A. Nerby and Jessica Otis has become a popular book in the low vision community, as well as, the medical and research community. The excellent review given by the medical journal has given suggestion to being a good resource for patients, families and also for medical and ophthalmology students. To read the review click here.

Books will be available for sale at the AFI "Make a Miracle" conference for $25. Save on shipping and get yours there. They make great gifts for family, your child’s teachers, physicians, and friends or donate it to your local library to help spread awareness about aniridia syndrome.

This is the first book done by two people born with sporadic aniridia. They also have the added experience of being moms to children with familial (inherited) aniridia. This inspiring book has something for everyone and makes a great gift for teachers, loved ones, and friends.

There are medical chapters by several renowned doctors, a chapter just for parents/family members, one for teachers, and two chapters of personal stories from many AFI members, plus more.

All books will come with a CD so for those who use screen readers or zoom text programs it will make reading it easier.
Read a review of the book.

“The bracelet was invaluable in allowing a correct diagnosis to be made quickly by the EMT’s as the bracelet stated that my child’s dilated pupils were due to Aniridia. A code with an online access provided the emergency room doctors with past medical history and a short synopsis of aniridia syndrome which assisted with her care.” E.K.B.

American Medical ID SUPPORTS Aniridia Foundation International by donating 20% of each order back to help those born with low vision and blindness (when ordering here or using our code over the phone or order form)

“My father takes the blood thinner Coumadin, my elderly grandfather has a pacemaker, my brother-in-law has diabetes and my great uncle takes multiple types of medications and sometimes is very forgetful….for FATHERS DAY…I am getting them a Medical ID. There are many people with conditions which should have a Medical ID bracelet, wrist band or necklace…but only one reason to have it…to save their life in an emergency.” R.G.

Show your concern for those you love….while showing your support for AFI

With summer vacations in full swing, those people who travel away from home to "get away from it all" also get away from their family doctors. If you are out of town when you experience a medical problem, those treating you won't be familiar with your conditions. Having a Medical ID is a handy way to insure that your specific needs are addressed. The included optional secure online medical record (for EMT or physician use) allows even more personalized treatment. This can save lives in emergencies. There are so many people who have need for these bracelets which provide the security of knowing that in event of an emergency, they will be treated correctly and responsibly. These Medical ID’s come in bracelets, jewelry, watches, sports wristbands, necklaces and even ones for the durability of kids.