NATIONAL ORGANIZATION FOR ALBINISM AND HYPOPIGMENTATION
Programs and results
What we aim to solve
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
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.
Family Summer Camp
NOAH Camp is an opportunity for children with albinism and their
families to share a fun-fi lled outdoor vacation with others like
them.
Where we work
External reviews
Photos
Videos
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
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.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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
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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
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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
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Operations
The people, governance practices, and partners that make the organization tick.
Connect with nonprofit leaders
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- Analyze a variety of pre-calculated financial metrics
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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
NATIONAL ORGANIZATION FOR ALBINISM AND HYPOPIGMENTATION
Board of directorsas of 05/30/2023
Donte' Mickens
National Council on Compensation Insurance NCCI
Term: 2022 - 2024
Torey Alford
Space Flight Industries
Donna Appell
Hermansky-Pudlak Syndrome Network
Kris Baker
Brookhaven College -Dallas County Community College
Brandi Bogan
Certified Birth Doula
Elizabeth Drury
Wesleyan Church, Indiana Wesleyan University
Sonja Harris
New York State Nurses Association
Don Martin
Alter Trading Corporation
Donte' Mickens
National Council on Compensation Insurance NCCI
Elliot Ostrove
Epstein Ostrove, LLC
Emma Brinkley
IQVIA
Kayla Hamlin
Ohio State School for the Blind
Andrew Sartorius
Mine Nisanci Garlin
Rosalind Isom
Juvenile Court, Clayton County
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
Disability
We do not display disability information for organizations with fewer than 15 staff.