Aniridia Foundation International

WelcomeFor some, your journey has just started, andothers have a whole life full of experiences.Either way, you will be able to learn and sharemany things through Aniridia FoundationInternational.

In the past, there was little information andeven less research about aniridia, mostlybecause ophthalmologists do not see manycases and are sometimes unfamiliar with itscomplexities. I felt the key to understandingthis eye and medical condition called aniridiaand to get researchers to make advancements,was to unite those affected by aniridia, theirfamilies, caring physicians, and determinedresearchers. Over the past eight years, AniridiaFoundation International (AFI) has made a realdifference in the lives of many. We have madea difference by supporting families in the lowvision community, creating awareness aboutaniridia, and spearheading important research.But we still have a ways to go.

The core of AFI is centered on research-basedprojects such as our largest and most importantproject, the International Aniridia Medical

Registry and Gene Bank. United, we now havethe tools (our collective medical data) and ourAFI Medical and Scientific Advisors assistingus with our cause. By working together we canaccomplish many things!

I was born with aniridia and glaucoma and myson inherited it, so I personally know the challenges of living with aniridia. You are notalone and we are here to help! We welcomeyou to join us and see how our efforts can oneday Make a Miracle!

Jill NerbyExecutive Director, Aniridia Foundation International

Aniridia Foundation InternationalUniversity of Virginia School of MedicineDepartment of OphthalmologyPO Box 800715Charlottesville, VA 22908-0715

www.aniridia.netwww.research4vision.comAbout AFI Page 2

Our Mission Statement Page 3

Our Board of Directors Page 4

Member Benefits Page 5

Programs We Support Page 6

What is Aniridia? Page 9

A Guide for Parents Page 11

Our Book Page 14

Take Our Hands, Walk with Us, Share Our Dreams, and Help Us Make a Miracle!

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About Aniridia Foundation InternationalAniridia Foundation International (AFI) is a501(c) 3 non-profit charitable organization dedicated to assisting those with low vision orblindness. Executive Director, Jill Nerby, founded AFI in 2001. Jill was born with aniridiaand glaucoma and hasundergone numeroussurgeries to preserve her vision. Because ofJill’s experience with thiscondition, as well as herpassion to help others,educate the public, and a desire to make a difference for visuallyimpaired and blind children of today and tomorrow, she investedher personal savings and time to launch this foundation.

In January of 2002, AFI board members Peter A.Netland, MD, PhD and Edward J. Holland, MDfounded and currently co-chair AFI’s MedicalAdvisory Board. Dr. Netland is a worldrenowned glaucoma specialist who spent several years as Director of GlaucomaServices at the Hamilton Eye Institute inMemphis before being chosen as Chair of theOphthalmology Department at the University of

Virginia where he presently resides. Hisresearch has focused on the pathophysiologyof glaucoma and potential improvements in thediagnosis and treatment of this disease. Dr.Holland is Director of Cornea Services at theCincinnati Eye Institute and Professor ofOphthalmology at University of Cincinnati,Cincinnati, Ohio. His expertise in corneal disease and cutting edge stem cell transplanta-tion procedures have people from across theglobe seeking his expertise to restore theirvision. Dr. Netland and Dr. Holland now shareAFI’s Medical Board with 13 other national andInternational specialists.

AFI has experienced tremendous growth overits short eight years of existence. In 2002 AFI had approximately 25 families registeredas members. Today, the organization has over550 families as members. AFI is proud toreport that an astounding 5,000 professionals,doctors and researchers are on the organiza-tion’s medical newsletter circulation list andbenefiting from AFI’s impressive MedicalBoard. All this growth has taken AFI’s missionto families from USA, Canada, Puerto Rico andover 15 other countries around the world.

Want to Help?Volunteer on an AFI committee and become an active member.Donations can be made by:

• Mailing a check to our address

• Making a donation online with a credit card at www.aniridia.net

• Enrolling in a United Way payroll deduction plan through your workplace

• Starting a corporate sponsorship (ask us for our corporate packet)

• Having your organization hold a FUNdraiser

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Our Mission StatementFor many years, aniridia has been reported assomewhat rare, although we feel this conditionmay be more common than previously thought.If you only consider the aspect of being bornwith underdeveloped eye structures due to agenetic defect (retina, optic nerve, iris, etc), thisin fact is uncommon. Aniridia is a multi-facetedcondition comprised of eye and medical issuessuch as glaucoma, cataracts, corneal disease,diabetes, low vision and even blindness. Tohave many of these conditions in one person,such as in the case of a person with aniridia, it is uncommon. Yet these individual issues arevery common in the general population. This is one reason our research goals often lead us to helping many others with low vision orblindness who share the same common issuesas those with aniridia.

Ironically, even the naming of the conditionmany years ago is misleading. Named today, it would probably be called something else.Even though it’s the most noticeable physicalcharacteristic, the term “aniridia” which means “no iris” is not entirely correct and is the very least of the problems for people withthis condition.

Overall Goal Aniridia Foundation International (AFI), alongwith its medical and research professionalsseek to find a cure for aniridia. At the sametime, through AFI’s core research program, The International Aniridia Medical Registry andGene Bank (IAMR), we seek to assist in theadvancement of research and a cure of theadditional conditions which make up the multi-faceted condition of aniridia. We believethat this AFI research program will continue tolead to improved understanding, better patientcare, and lead us closer to a cure.

Immediate GoalAFI believes that while research is important,helping infants born with aniridia and children /adults living their life with aniridia is also veryimportant. Through educational and supportprograms and the AFI medical conferences,our goal is to assist in providing the informationneeded to allow them to make sound medicaldecisions about their own health care choicesand provide the emotional support so that it willenable them to have a healthy, independent life.

Everyday GoalThrough our educational projects, medicalmeeting exhibitions and fundraisers, AFI seeksto promote awareness among the public andmedical community and to dispel misconceptionsabout people with disabilities such as aniridia.Due to its low profile among other conditions, it is our goal to educate others about aniridia.

AFI was created to unite people with aniridia,their families, physicians, researchers andteachers to work together towards these goals.

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Helping Other Eye and MedicalConditions Via ResearchBeing a subset of the low vision / blind community, and empathetic with others wholive with the issues as we do, we have pledgedto help advance research of aniridia and theeye and medical conditions which define it. The Aniridia Foundation International researchprogram collects extensive medical data, DNAand works closely with several universityresearch programs. We believe that throughthis research program we will help those withaniridia at the same time as others in the general population living with conditions wealso experience such as glaucoma, cornealdisease, diabetes, autism, etc. We seek patient support in participating in this researchcollection, as well as, research funding fromsupporters of the areas of which we may assist in advancing research.

Note:Aniridia Foundation International (AFI) is a501(c)3 non profit organization helping thoseborn with low vision and blindness due to thegenetic eye and medical condition aniridia. This condition is caused by a defect in the PAX 6 gene which is responsible for develop-ment of the eyes, kidney, pancreas, and thebrain. Hard to control glaucoma, cataracts,corneal scarring / disease, low vision /blindness, retinal detachments, diabetes,obesity and autism spectrum disordersare all conditions found commonly amongst different people in the general population. The difference is that a child / adult withaniridia may be born or live with several ofthese conditions as there is no cure…yet.Please support AFI and Help Us Make aMiracle for those affected.

Executive Board

Jill A. NerbyExecutive Director

Peter A. Netland, MD, PhDChair, Dept. of OphthalmologyProfessor of OphthalmologyUniversity of Virginia

Christopher J. Albrecht, CPAAlbrecht CPA and Consulting

Edward J. Holland, MDDirector, Cornea ServicesProfessor of OphthalmologyUniversity of CincinnatiCincinnati Eye Institute

Medical Advisory Board

Co-Chairs: Peter A. Netland, MD, PhDEdward J. Holland, MD

Scientific Advisory Board

Co-Chairs: James Lauderdale, PhDCellular BiologyUniversity of Georgia

Ali Djalilian, MDUniversity of Illinois-Chicago

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Member BenefitsOur organization was created to unite thosewho are born with the disabling eye condition,aniridia, and their families. Our internationalmembership consists of those affected, theirfamilies, physicians, researchers, medical personnel, teachers and vision specialists.

Our member database serves many purposes:to keep members informed, to allow aniridiafamilies to meet and share experiences, and to help the research community by providingmedical and research data so we may findimproved treatments and a cure.

We provide support, educational and social services to our membersthrough many benefits and programs.A free quarterly newsletter with various important information on aniridia, treatments,events, research, conference details, and regular columns like “Meet Our Member” and”Parents Pride”.

A website with medical, research and practicalinformation for those affected, their families,and a special area for teachers / educators.

An online private “members only” area is also available. This area holds additional membership benefits for active AFI members who:

• wish to share information or post questions

• wish to participate in AFI special events such as the physician or researcher chat nights

• wish to get discounted rates, advance registration, special event invites, and other perks for conferences, events, products.

• wish to develop friendships and support networks.

Please see membership folder for details.

“I felt an instant support system.”

Page Ferrell, diagnosed with aniridia

“It was invaluableto meet otherfamilies copingwith aniridia.”

Will Richardson, son of Victoria & Craig Richardson, diagnosed with aniridia

Be a part of the solution.Become an active member by volunteering ordonating to AFI. If you are not an active memberyet, go to our website at www.aniridia.net and fillout member form online, or download the form and mail or fax it to us.

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Programs We SupportAniridia Foundation International (AFI) seeks to use its funds wisely and to get the most outof every dollar. Therefore, we try to create programs that have dual purposes to make themost of our funds. As you will see, the beautyof these programs, being complimentary toeach other, is that AFI can serve the needs ofresearch and patient care at the same time.

ResearchLauderdaleLaboratory:

Dr. JamesLauderdale, PhD isCo-Chair of theAniridia FoundationInternational ScientificAdvisory Board and

helps AFI with theirresearch programs such as the InternationalAniridia Medical Registry and Gene Bank.

In the Lauderdale Laboratory at the University of Georgia, researchers study the role andfunction of the PAX6 gene in the human eye.This gene is required for proper developmentof the eye prior to birth and is involved in maintaining the eye throughout childhood andadulthood. Lauderdale Laboratory is involved in exciting research that could someday beused to treat defects of the eye and help to restore vision in individuals who suffer fromPAX6-related disorders. AniridiaFoundation International is asubstantial contributor to theLauderdale Laboratory.

International Aniridia Medical Registry and Gene Bank:

We have created an International AniridiaMedical Registry where we are currently collecting data on aniridia and its associated or suspected associated conditions from allpeople born with aniridia. Our gene bank willhelp with research and education of the medical community through clinical photographs,DNA and tissue samples. Both aniridia and glaucoma will be studied with the data throughthe registry and gene bank. Our currentresearch goal is to obtain enough funding sothat we may help fund new aniridia researchand its conditions that affect people with aniridiasuch as: glaucoma, corneal scarring, nystagmus,cataracts, and the genetics involved in each.

CUDDLES and WE CARE ProgramsThese programs focus on the emotional support for children (Cuddles) and teens andadults (We Care). In Cuddles, stuffed teddybears or animals with personalized t-shirts are sent to infants and children who are either going through surgery, transplants,chemo-therapy or dealing with stressful situations. These Cuddles bears have beenused in play therapy to help children overcomethe fear of eye examinations or surgery whenparents and/or the doctor examine the bears’

eyes first or practices preparationsfor surgery with the bear. Teensand adults may also experiencefear, need someone to talk to, orjust feel good that people arethinking of them during this time.In the We Care program, when a person is referred, we send outan age appropriate “thinking ofyou” item.

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EducationAwareness in the Medical Community:Each year, Aniridia Foundation Internationalexhibits at several medical conferences put onby organizations such as the AmericanAcademy of Ophthalmology (AAO), AmericanAcademy of Pediatrics (AAP), World CorneaCongress (WCC), American Society ofCataract and Refractive Surgery (ASCRS), and the Eye Bank Association of America. We also have future plans of exhibiting at low vision and National EducationAssociation meetings.

Our presence at these distinguished medicalconferences has raised the awareness of aniridiaand created interest in research opportunities.

AFI Medical Conference:Through AFI’s biannual medical conferencesand with the help of our Medical Advisory andScientific Boards, we bring in top physiciansand researchers to speak on aniridia and its associated conditions, the latest research,new treatments and topics to enrich the lives ofthose with aniridia and their families. Sinceaniridia is a subset of the low vision and blindpopulation, we also have seminars on generallow vision and blind topics to help people maintain a quality of life. This is also a timewhen families can get know others with aniridiaand make special connections with people whocan relate to their personal experiences.

The HOPE FundThis fund’s primary focus is to help offset costsfor needy families or individuals who want toattend AFI’s medical conferences. AFI can give these families the opportunity to have the education they need from our renowneddoctors and researchers to make good medical

decisions. Our medical conferences have consistently been valued highly among thosewho have attended as a great time to connectwith others. Individuals or families must furnishfinancial proof of need and will be selected as funds allow.

OPTIC ProgramThis program has helped many individuals with aniridia and other cornea patients whoexperience the corneal scarring that those withaniridia do. Aniridia Foundation International isproud of its involvement in helping to createthis program. In the beginning, the majority ofthe OPTIC patients were those with aniridia.During that time, AFI granted over $70,000since the inception of this program and is opento further partial funding requests in the future.

Those that have benefitted are those withcornea problems such as aniridia, Stevens-Johnson Syndrome, chemical and thermalburns to the eyes, extensive contact wearpatients and other corneal diseases.

This program is to assist those in these conditions through a procedure called theKeratolimbal allograft or KLAL. In this procedure, stem cells from cadaver donors aretransplanted onto eyes of those blinded by certain corneal diseases. Close monitoringafter a KLAL stem cell transplant is very important in retaining sight. It is also importantfor patients to stay educated about their medications and health after the procedure.

The OPTIC program is made up of a team ofdoctors and an OPTIC coordinator. The teamof doctors consists of one corneal, retinal, glaucoma, ocuplastic and nephrology/trans-plantation specialist. The OPTIC Coordinator is a Registered Nurse experienced in trans-plantation and the associated medications.

Programs We Support (continued)

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The coordinator is the liaison between themedical team and the patient. The coordinatoreducates the patient of the compliance issuesrequired for the KLAL procedure. Blood work ismonitored on a monthly and quarterly basis withthe results reported to the team of doctors. This doctor-patient interaction is paramount inmanaging the health of the patient and mini-mizing any side effects from the medications.

The beauty of these programs being compli-mentary to each other is that AFI can serve the needs of research and patient care at thesame time.

WebsiteOur public website gives basic information onaniridia and its associated conditions such asglaucoma, corneal scarring, cataracts, lowvision, Wilms’ tumor (a cancerous tumor of thekidney in young children) and diabetes.

Members and the Public:For our members, we have an area wheremembers can meet and connect with others,ask questions, discuss topics, gain support,and develop friendships.

Physicians and Researchers:We also have a special area for physicians and researchers entitled the AFI KnowledgeTransfer Center at www.pax6.com.

NewslettersMembers and the Public: AFI’s quarterly newsletter for members and thepublic is called “Eye on Aniridia” and throughgenerous donations, are free, which allowsmembers at 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 Member”,“Parents Pride”, and “From the Director.”

The newsletter it is available in large print,audio (CD), and in PDF / Word formats for those with low vision or blind using anenlarging or screen reader computer program.

Physicians and Researchers:AFI’s semi-annual newsletter for physiciansand researchers is called “Aniridia InSight” and is distributed via mail and email to theseprofessionals around the world. The articlesare written by medical and research profes-sionals for those desiring to learn more aboutaniridia, its associated conditions, treatmentsand research. This is an excellent way to keep the clinical community and the researchcommunity aware of the latest developmentsand ways they can help each other.

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What is Aniridia?DescriptionAniridia is a genetic eye condition usuallydetected at birth. Its approximate occurrencerate is 1/50,000 births. Aniridia is produced bya failure in development of the ocular globeduring pregnancy due to a genetic mutation, a deletion in the short arm of the chromosome11p13 affecting the PAX6 gene, which isresponsible for the formation of the eye.

The term “aniridia” means without iris (the colored part of the eye which expands andcontracts to control light), and although notentirely absent, all that remains of the iris is athick collar of tissue around the outer edge.The muscles which open and close the pupilare missing entirely. In addition to the lack ofiris, many people with aniridia have othersevere eye conditions which further limit vision.Such associated problems are: glaucoma, malformation of the retina, corneal degeneration,amblyopia, foveal hypoplasia, cataracts, nystagmus, lens sublaxation (dislocation), andmacula and optic nerve disease. Most peoplewith aniridia have vision of20/200 or worse and are considered legally blind.

Since aniridia is a genetic disorder, there are other conditions that are sometimesassociated with it such asWAGR Syndrome. WAGR isan acrostic for Wilms’ tumor(cancerous tumor of the kidney usually occurring beforeage 8 years old), Aniridia,Genitourinary abnormalities or Gonadblastoma,and Retardation. This larger genetic deletionincludes the PAX6 gene and the nearby WT1 gene. About one-third of those born with sporadic cases of aniridia will have theWAGR Syndrome.

All of these conditions may occur through agenetic mutation (sporadic) and then may bepassed down from generation to generation(familial). Once a sporadic case is identified, a familial inheritance pattern will occur.

Every person with aniridia will have a 50 percentchance of producing a child with aniridia witheach pregnancy. For this reason, there is aneed to help people who are affected visually,help research in this area, and stop the progression in family lines.

Associated ConditionsGlaucoma: Glaucoma iscalled the “thief of sight”because there may not be any signs before much damage is done. Since glaucoma in people withaniridia can develop at anyage including birth, it is important to have the child’s pressure checked at birth

and every 6 months thereafter.

Wilms’ Tumor: Most pediatricians suggestgenetic testing if a diagnosis of sporadicaniridia is found at or shortly after birth. This isbecause of the possibility of WAGR Syndrome.

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Due to some unusual findings of normal genetickarotype patients later producing a Wilms’ tumor,we suggest that all children up to eight yearsold with sporadic aniridia have ultrasounds every3 months to monitor their kidneys. While therisk is lower with a genetic test in which theWT1 gene is intact, this ultrasound monitoringis simple, non-invasive, and is a good preventivemeasure. Most Wilms’ tumors, if caught early,can be cured.

Corneal Scarring (Degeneration): Peoplewith aniridia usually develop corneal scarring atsome point in their life. Most are seen in theirteens and 20’s. However, it can develop earlier,especially if there is a trauma to the cornealsurface such as a scratch or an abrasion froma contact lens. It has been estimated thatabout 90 percent of those with aniridia developthe corneal scarring. The cornea is the outerlayer of the eye in front of the iris and pupil.The reason for this scarring is due to the eye’slimbal stem cells either being underdevelopedor not working properly to generate new

corneal tissue.Ironically,these limbalstem cells arelocated in thearea wherethe underde-veloped iris is located.

These cellsare responsible for making new cornea cells tokeep the corneal surface healthy and clear.However, the limbal stem cells in a person withaniridia do not work well. When their corneacells are sloughed off, the cells from the whitepart of the eye (sclera) grow in to cover thearea. This Condition is called Limbal Stem CellDeficiency (LSCD). The cells from the scleralarea are not transparent like the cornea cells.This is what reduces the vision of the personwith aniridia.

Limbal stem cell deficiency can be found earlyby a corneal specialist experienced in aniridia.As it occurs, reading becomes difficult, thenlarger objects or people are difficult to see. Asthe condition worsens, the person will only seelight and dark contrasts. The good news is thatLSCD can be treated with good results ifcaught early. We suggest to all our members tohave their children monitored so that LSCDcan be treated when it is necessary by anexperienced corneal surgeon who is knowl-edgeable about aniridia. It is also important tonote that corneal transplants are not successfulfor those with aniridia without a limbal stem celltransplant being done first.

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A Guide for ParentsWe know that for some of you, the diagnosis ofaniridia has come as a complete shock. But weare here to help you learn, be supportive, andprovide advice. We have members young andold who were born with aniridia and are willingto share their experiences. Parents and familiesare also involved and can provide support fromtheir perspective.

Our Medical Advisory Board spans many different specialties of doctors and researchers.They have been chosen because of their experience in treating people with aniridia, ortheir work in aniridia research and their strongdedication to helping us.

Will My Baby See?Your baby was born with eye structures thatare underdeveloped due to a genetic error. The optic nerve, retina, lens, and iris can all beaffected and may cause different visual acuitiesfrom child to child depending on the extent ofunderdevelopment. The lack of a fully devel-oped iris will be the most noticeable feature,yet the least of concern. It may look like yourbaby has dark eyes, however, it is like anenlarged pupil surrounded by the iris stumpthat never grew. Some with aniridia will most

likely experience some sensitivity to light, amedical condition known as photophobia.

The absence of iris doesn’t cause blindness;however, proper monitoring by an ophthalmolo-gist who has experience with aniridia will watch for the associated conditions such asglaucoma, cataracts, strabismus, nystagmusand corneal scarring which can limit vision orcause loss of vision.

Most young children have a visual acuity ofbetween 20/80 and 20/200. The ideal vision ofa person is 20/20. A baby’s visual acuity canbe estimated early in life by how they react toparents faces, their interest in objects and theability to follow objects from side to side. Sinceinfants with aniridia have some vision, theyshould learn to walk and develop as a childappropriate for their age. However, there may be depth perception difficulties. This may cause some problems with hand-eyecoordination. For this reason, kids may seemclumsy and should be careful when walkingaround changes in the ground level and nearsteps. Fortunately, there are many adaptationsthat can help.

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What is Photophobia?Think of the eye as a camera and the shutter isthe iris. If too much light is let into the cameralens, the picture will be washed out or overde-veloped. This makes the definition of objectshard to see. When too much light falls onto the retina, it can cause discomfort and loss ofvisual acuity. Artificial lighting indoors can alsocause glare.

Some children may try tocontrol light by squintingor have a condition knownas ptosis (toe-sis). This iswhere the eyelids droopto compensate for thelight entering the eye.Often it may look like thechild is sleepy to otherswho do not know of theeye condition.

Vision can be diminishedfor anyone when glare isinvolved. For this reason,pick sunglasses for babiesand children with polarizedlenses to block out theglare. There are specialsunglasses made forbabies and a brimmed hat can also help.

Why do Doctors want Genetic Tests?Aniridia is produced by a failure in developmentof the ocular globe during pregnancy due to agenetic mutation, a deletion in the short arm ofthe chromosome 11p13 affecting the PAX6gene, which is responsible for the formation ofthe eye. About 2/3 of all cases are inherited(familial), but it can also happen sporadically(neither parent has it). The error can occur in

the father’s sperm, in the mother’s egg, or afterconception. Aniridia is an autosomal dominantcondition which means it only takes one defec-tive PAX6 gene to produce this eye condition.

When the parent has aniridia and passes it onto their child it is known as Familial aniridia.When the person with aniridia is involved with a pregnancy, there is a 50 percent chance witheach pregnancy, that the child born will also

have aniridia. In AniridiaFoundation Internationalthere are many familieswho have several generations of memberswith aniridia.

Sporadic aniridia happensin the other 1/3 of aniridiacases. Of the sporadiccases,1/3 of those willhave a more severe disorder called WAGRsyndrome. This is causedby a larger deletion of the 11th chromosomeinvolving the PAX6 geneand the nearby WT1 gene,responsible for the Wilms’tumor. WAGR syndromestands for Wilms’ tumor(cancerous tumor of thekidney usually occurring

before age 8 years old),Aniridia, Genitourinary abnormalities orGonadblastoma, and Retardation. To be diagnosed with WAGR, a child will haveaniridia and at least one of the other symptoms of WAGR.

This is why doctors want to have genetic tests.It will give them an idea of what to watch outfor medically and developmentally so that your

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child can get the best possible care and monitoring.

Doctors suggest that all children up to eightyears old with sporadic aniridia have ultrasounds every 3 months to monitor theirkidneys. There have been reports of older people getting Wilm’s tumor; however, it israre. Many parents move to a longer intervalbetween ultrasounds after age eight, after consulting their doctor.

EarlyInterventionis ImportantWhen yourbaby is diag-nosed with this low visioneye disorder,you shouldcontact your

Department of Human Services to inquireabout early intervention options and an assessment. Therapists will work with yourbaby to help him or her develop to his or herbest potential. There are many moms and dads in Aniridia Foundation International that canhelp you with information and support you during this difficult time.

A Message to Remember It may seem overwhelming now; however, ourfoundation gives you the tools to learn throughour medical conferences where we bring in topdoctors experienced in aniridia to speak to you,and support networking with families who haveexperience with the challenges of aniridia. Youwill meet many children, teens and adults withaniridia who have excelled despite their limitedvision and can help you understand what yourchild’s life might be like. Grandparents, parentsand other relatives are also members and cangive their very special perspective and support.

“We discovered we are not alone in this journey.”

Mark & Heidi Petre with daughter, Anna, diagnosed with aniridia

Take Our Hands, Walk with Us, Share Our Dreams, and Help Us Make a Miracle!

A Guide for Parents (continued)

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We are very happy to report our first book,Aniridia and WAGR Syndrome: A Guide forPatients and Families was released Spring 2010!Additionally, we are pleased to share that due toa special agreement AFI worked out with thepublisher, all books will come with a copyrightedCD. We wanted the book to come on CD so ifyou have a screen reader or zoomtext program itwould be easier for you to read it.

To order, please fill out the form below, or forinternational orders use:

Oxford Publishing (UK and Canada)

Amazon.com (UK, Ireland, Canada, Germany, Austria, France and Japan)

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Aniridia Book Order FormWe are pleased to offer our first book, Aniridia andWAGR Syndrome: A Guide for Patients and Families.Included with the book is a CD version (as a Word document for Screenreader and as a PDF for ZoomText).

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Aniridia Foundation InternationalUniversity of Virginia School of MedicineDepartment of OphthalmologyPO Box 800715Charlottesville, VA 22908-0715

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Aniridia Foundation InternationalUniversity of Virginia School of Medicine

Department of OphthalmologyPO Box 800715

Charlottesville, VA 22908-0715

www.aniridia.netwww.research4vision.com