About NOAH - National Organization for Albinism and Hypopigmentation

Founded in 1982, NOAH serves the albinism community by providing information and support. Here you will find NOAH’s vision statement, mission statement, an overview of NOAH finance, information about the Board of Directors and the staff, a brief history of the founding of NOAH, a list of significant milestones as well as contact information.

Vision

We envision a world where people with albinism are empowered to be fully-functioning members of society, where barriers and the stigma of difference no longer exist, and where people with albinism have a quality of life that is rewarding, dignified and fulfilling.

Mission

NOAH’s mission is to act as a conduit for accurate and authoritative information about all aspects of living with albinism and to provide a place where people with albinism and their families in the U.S. and Canada can find acceptance, support and fellowship.

NOAH Finance

NOAH is a not-for-profit corporation chartered in Pennsylvania. NOAH has a 501(c)3 tax-exempt status within the Internal Revenue Service, Tax ID Number 23-2265173. NOAH is a registered charity in all US states requiring such registration. Additional state nonprofit disclosure information is available at www.albinism.org/state-disclosures. You may also review NOAH’s latest IRS form 990 and audited financial statement for more information.

NOAH Board of Directors

The NOAH Board of Directors is made up of as many as 13 people. Up to twelve directors are appointed by the board and serve 4-year terms. Three directors’ terms are up each May 31st. One director is a permanent representative of the Hermansky-Pudlak Syndrome Network.

The NOAH board provides governance and oversight to operation and leads fundraising efforts. Directors are volunteers.

NOAH History: How it all began

A social worker collecting names of people who had albinism like herself, a 14-year-old girl with albinism writing a school paper and trying to understand her own condition, and a researcher at the University of Minnesota who was fascinated with albinism were destined to establish an organization that has served the albinism community when chance brought them together more than 30 years ago.

Janice Knuth, a social worker and person with albinism, had collected contacts of people with albinism from all over the country for years. One contact on her list was Ruth Ryan, the mother of a girl with albinism. Ruth’s name was added to the list when her daughter, Lisa, decided to write an 8th grade health report on albinism. The research led Lisa and her mom to a vision-related library housed in the same building containing the Philadelphia social service agency where Jan worked. Jan was available to anyone with albinism visiting the building. Lisa welcomed the opportunity to meet an adult who shared her rare condition.

Jan wasn’t sure what would come of the list of contacts until an opportunity presented itself. When Sharon Thompson of the Community College of Philadelphia asked Jan for workshop proposals that would serve the needs of a disabled community, Jan successfully pitched an idea for a workshop that dealt with low vision in general and albinism specifically.

Jan used her contact list to create a team to plan the workshop. Ruth Ryan joined the team. In preparation for the workshop, one of Ruth’s tasks was to contact Dr. Carl Witkop of the University of Minnesota to obtain his permission to photocopy and distribute his article on albinism. Dr. Witkop not only granted permission to use his article, he offered to attend the workshop! The serendipitous intersection of these four people’s paths led directly to the birth of NOAH.

NOAH tradition sets the founding of the organization on Friday, October 15, 1982, in Philadelphia, PA. For dinner that night, Carl Witkop, Ruth Ryan, Dennis Moore and Philip Payette were joined by three people with albinism, Ms. Ryan’s daughter Lisa, Jan Knuth and Jeanne Leek. It was the eve of the albinism workshop sponsored by the Community College of Philadelphia. Dr. Witkop made the proposition that they should form an organization for people with albinism. They agreed enthusiastically, and Jan noted the seven had the talents needed to start the group.

The next point of business was finding a name for the organization. Dr. Witkop recalled reading about a part of the Dead Sea scrolls that described the biblical Noah as having albinism. Dr. Witkop proposed a name with the acronym NOAH. It was easy to find meaningful words for the first three letters – National Organization for Albinism. Finding a letter for H eluded the group. Inspiration struck during the night. Dr. Witkop excitedly shared his idea prior to the meeting the next morning. Hypopigmentation, the reduction or absence of melanin pigment is the hallmark characteristic of albinism. From then on, NOAH would stand for the National Organization for Albinism and Hypopigmentation.

The one-day workshop on Saturday, October 16, 1982, brought together about 100 people affected by albinism from across the United States. A second albinism workshop was held in Philadelphia in 1983. In the meantime, Jan Knuth gathered a small group to take preliminary steps to formally establish NOAH.

The first issue of NOAH News appeared early in 1983. NOAH archives indicate that the first board meeting took place exactly one year following that auspicious dinner. On October 15, 1983, more than 60 people celebrated NOAH’s first birthday in Philadelphia by meeting and planning a course to build the organization. Articles of Incorporation for NOAH were filed in Pennsylvania on March 5, 1984. The Internal Revenue Service granted tax-exempt status in November 1985.

From the very beginning, NOAH has focused on providing information and support to the albinism community. Recognizing the inherent value that comes when people who share a rare genetic condition gather, NOAH acts as a conduit for authoritative information about all aspects of living with albinism and provides a place where people with albinism and their families can find acceptance, support and fellowship. NOAH’s development, steady growth and accomplishments have been fueled by the dedication of many volunteers who have shared their time, talent and treasure in service to the albinism community.