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Aniridia and WAGR SyndromeA Guide for Patients and Their Families$
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Jill Ann Nerby and Jessca Otis

Print publication date: 2010

Print ISBN-13: 9780195389302

Published to Oxford Scholarship Online: November 2020

DOI: 10.1093/oso/9780195389302.001.0001

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PRINTED FROM OXFORD SCHOLARSHIP ONLINE (oxford.universitypressscholarship.com). (c) Copyright Oxford University Press, 2021. All Rights Reserved. An individual user may print out a PDF of a single chapter of a monograph in OSO for personal use. date: 27 October 2021

Jill Nerby and Aniridia Foundation International

Jill Nerby and Aniridia Foundation International

(p.162) 12 Jill Nerby and Aniridia Foundation International
Aniridia and WAGR Syndrome

Jessica J. Otis

Oxford University Press

Jill Nerby was the first to welcome me to Aniridia Foundation International (AFI) when I joined. Shortly after beginning to volunteer for AFI’s members’ newsletter, I approached Jill about doing this book. Instantly she approved of my idea and told me if I needed anything to let her know. She has been instrumental in shaping the book’s content and eliciting the participation of all the doctors and professionals. Her support and wisdom have helped create this informative book for you, and they have meant a great deal to me. She is caring and friendly to all. Jill inspires us to strive towards goals for AFI and in our own lives. Here is her inspiring personal life story and the tale of how she began Aniridia Foundation International (formally the USA Aniridia Network). Jill Ann Nerby was born in Milwaukee, Wisconsin, in 1961 to her parents, Dennis and Sullen Nerby. She was officially diagnosed with aniridia when she went for her three-week check-up. Jill’s parents were told that she was only the second person in the state of Wisconsin to be diagnosed with aniridia. Dr. George Worm realized something was wrong with her eyes and sent her to a well-known ophthalmologist in Chicago, Illinois, with experience in aniridia. This doctor tested Jill for glaucoma and found that she had been born with it. She was then put on eye drops, since the doctor felt Jill was too young to have surgery. Jill’s parents were devastated, since she was their first child and the family’s first grandchild. They did not even know if she could see and thought she might be blind already. They asked many people and sisters at the Catholic convent to pray for Jill. Today Jill has a younger sister, Marybeth, and a younger brother, Jeff; they do not have aniridia. Jill says growing up was challenging at times. Kids would sometimes tease her, leave her out, or pick her last.

Keywords:   CUDDLES, Step Up (film), United Ways, We Care program, “Make a Miracle,”, “Songs for Sight,”

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