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Fall 2004 Table of Contents
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NOAH Conference 2004: A Life Changing Event

By Erika Martinez, Parent, Lozano, Texas

Abstract: A parent describes her family's experience attending the National Organization for Albinism and Hypopigmentation conference.

Keywords: Family, blind, Albinism, Hypopigmentation, NOAH

My husband Jorge, our two daughters Scarlett and Hailey, and I returned home this summer from the most amazing trip of our lives. We drove to Atlanta, Georgia, to attend the 10th annual NOAH conference. The conference is sponsored by the National Organization for Albinism and Hypopigmentation (NOAH) for people with albinism and their families.


Erika, Hailey, Jorge, and Scarlett Martinez

Our youngest daughter, Hailey, who is 2 ½ years old, has oculocutaneous albinism. This means she lacks pigment in her hair, skin, and eyes. This was the first time we have attended a NOAH conference, which are held every two years. It was a 3 ½ day event, with each day's schedule comprised of different sessions with different speakers, events for children, teenagers, and parents, and optional tours and trips of the city of Atlanta. There were different sessions that pertained to the interests of every age group and sessions for parents of children with albinism, or adults or teens with albinism.

The sessions that we attended were very diverse, so educational, and informative. Topics ranged from the latest genetic research concerning albinism presented by geneticists from all over the country; to vision and education with Dr. Ann Corn from Vanderbilt University (a leading expert on low vision and education); to the latest research and information on ophthalmology from expert ophthalmologists in the field of low vision; to support groups for parents of children with albinism. These were just a few of the sessions that were offered. There were many others that appealed to different ages and people.


The Martinez family discover a life changing event in the 10th Annual NOAH Conference.

One of the things that was so amazing about the conference was how friendly, kind, and polite everyone we met was. We have never been anywhere where we have experienced so much warmth and friendship coming from such a large and diverse group of people. There were over 600 attendees from all over the U.S.A., Canada, and other countries. It is so amazing that everyone is so kind, and all because of the very special bond we share of albinism.

Thanks to partial funding from TSBVI Outreach, our family was able to attend this life-changing event! We appreciate your generosity so very much. Your support made our dream of attending the NOAH conference a reality. We are so thankful for the kindness and support you gave us. This conference was truly magical! We are very grateful that our daughter, Hailey, has these conferences to look forward to throughout her life. The support and love you feel from the albinism community is like no other!


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Last Revision: September 1, 2010