NATIONAL ORGANIZATION FOR ALBINISM AND HYPOPIGMENTATION

aka NOAH   |   E Hampstead, NH   |  www.albinism.org

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.

Ruling year info

1985

Executive Director

Karen Bly

Main address

PO Box 959

E Hampstead, NH 03826 USA

Show more contact info

EIN

23-2265173

NTEE code info

Alliance/Advocacy Organizations (G01)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

Albinism is a rare condition, affecting roughly one in 17,000 people. Because of this, accurate and authoritative information about albinism is not readily available to families of newly diagnosed children and medical professionals. This information void leaves the individual members of the albinism community on their own to learn about the condition. People with albinism and the parents of children with albinism must adapt to living with low vision and the stigma that comes with looking different. Emotional support for dealing with society’s sometimes hurtful treatment of disability and difference is needed in the albinism community. A person or family with albinism will often be the only such person or family in their neighborhood or town because albinism is rare. People with albinism and the parents of children with albinism often live in isolation and natural interaction with others with the condition is uncommon. People with albinism and their families need accurate information.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Biennial National Conference

Often described as a fun, festive family reunion, the national NOAH Conference presents the most comprehensive albinism education program anywhere and
affords plenty of time to socialize and enjoy fellowship. Authorities in a variety of fields present accurate information on living with albinism, raising a child
with albinism and the latest albinism research.

Population(s) Served
Adults

NOAH Camp is an opportunity for children with albinism and their
families to share a fun-fi lled outdoor vacation with others like
them.

Population(s) Served
Children and youth
Families

Where we work

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

NOAH strives to make accurate and authoritative information about all aspects of living with albinism available to those who have the condition and their families when they most need it. NOAH bridges the information gap by empowering those who are touched by albinism with resources related to low vision rehabilitation, early intervention, sun protection, genetics and self-advocacy. To support the unique social and emotional needs of our community, NOAH seeks to bring the albinism community together to share information, fellowship and support in person and virtually.

Use technology to collect and disseminate information about living with albinism and manage a network of those affected.
Create and maintain a local structure to connect the albinism community geographically and virtually.
Collaborate with vision service agencies, doctors, researchers, rare disease organizations and health advocacy groups.
Develop and maintain a capable and committed board of directors to govern the organization and raise the funds required to accomplish NOAH’s mission.
Raise the funds required to maintain programs and services through diverse campaigns.
Host local and national educational and social events, including events targeted toward children with albinism, parents of newly diagnosed children and adults with albinism.
Offer regular teleconferences and virtual trainings to address issues and concerns unique to our community.
Publish a quarterly magazine, offering stories and news of interest to the albinism community, including the latest research, educational issues, human interest stories, personal accomplishments of members and international albinism affairs.

Dedicated and capable volunteers, and part time staff successfully:
• Plan conferences and other events to bring the albinism community together
• Publish materials about living with albinism
• Maintain a large informational website
• Disseminate news and information regularly through social media
• Manage parent support programs
• Maintain a member database
• Advocate for people with albinism experiencing discrimination
The board of directors and board committees consist of individuals with experience in law, finance, management, education, science and medicine, technology and
Non-profit management.

Since 1982 NOAH has:
• Built a database of over 13,000 individuals
• Collected nearly 6,000 followers on Facebook
• Held 17 national conferences
• Held 9 family camps
• Held 17 adult weekends
• Published 2 parent books
• Published 102 issues of a quarterly magazine
• Distributed over 800 welcome toolkits to families of newly diagnosed children with albinism
• Created resources to help parents advocate for their children with albinism in school
• Held dozens of teleconferences and webinars
• Connected hundreds of people locally
NOAH will maintain existing programs and expand services to the albinism community by:
• Increasing income through more grassroots fundraising, grant seeking, major donor recruitment and lifetime gifts
• Building a network of trained local contacts
• Hiring additional staff
• Increasing collaboration with doctors, researchers and vision service agencies

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your 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.

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    We added programming to our NOAH connections virtual programs based on input from the NOAH Connections advisory committee, adding programming suggested by the group.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board,

  • How has asking for feedback from the people you serve changed your relationship?

    Community members feel empowered by the opportunity to contribute and feeling heard.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We act on the feedback we receive,

  • What challenges does the organization face when collecting feedback?

    It is difficult to get the people we serve to respond to requests for feedback,

Financials

NATIONAL ORGANIZATION FOR ALBINISM AND HYPOPIGMENTATION
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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NATIONAL ORGANIZATION FOR ALBINISM AND HYPOPIGMENTATION

Board of directors
as of 7/18/2021
SOURCE: Self-reported by organization
Board chair

Donte' Mickens

National Council on Compensation Insurance NCCI

Term: 2020 - 2022

Torey Alford

Space Flight Industries

Donna Appell

Hermansky-Pudlak Syndrome Network

Kris Baker

Brookhaven College -Dallas County Community College

Brandi Darby

FutureDerm Media Inc

Elizabeth Drury

Wesleyan Church, Indiana Wesleyan University

Sonja Harris

New York State Nurses Association

Mark LaRue

John Deere

Don Martin

Alter Trading Corporation

Donte' Mickens

National Council on Compensation Insurance NCCI

Elliot Ostrove

Epstein Ostrove, LLC

Emma Brinkley

IQVIA

Christie Falco

Attorney

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Not applicable
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? No
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? No
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? No

Organizational demographics

SOURCE: Self-reported; last updated 07/18/2021

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female, Not transgender (cisgender)
Sexual orientation
Heterosexual or Straight
Disability status
Person with a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability

We do not display disability information for organizations with fewer than 15 staff.