NATIONAL ALOPECIA AREATA FOUNDATION

aka NAAF   |   San Rafael, CA   |  www.naaf.org

Mission

NAAF supports research to find a cure or acceptable treatment for alopecia areata, supports those with the disease, and educates the public about alopecia areata.

Ruling year info

1982

President & CEO

Nicole Friedland

Main address

65 Mitchell Blvd, Suite 200-B

San Rafael, CA 94903 USA

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EIN

94-2780249

NTEE code info

Alliance/Advocacy Organizations (G01)

Specifically Named Diseases Research (H80)

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

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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?

Support

Research funding for 2008 was
$237,459.
Support and Awareness activities for 2007 was $840,704.

Population(s) Served
Adults
Families

The Treatment Development Program is an initiative that evolved from two research summits in 2008 and 2009.  It is a seven year, two-pronged program with the ultimate goal of finding safe and effective treatments for alopecia areata.  One approach will be to partner with corporations and the National Institutes of Health to review effective treatments for other related autoimmune and skin diseases to determine any possibility of efficacy for alopecia areata.  The second approach is discovering the immune target of alopecia areata through immunology research in hopes of identifying treatments not currently known or available.  This first segment of the program began in 2010 and has a goal of concluding in 2016.

Population(s) Served
Adults
Families

The Ascot Fund is a special program established thanks to an anonymous donor who wished to help adults and children with alopecia areata purchase a hairpiece.  Those who are interested can apply for the fund which provides up to $500 towards a hair prostheses.  By donating to this fund you will truly make a difference in the lives of those who have alopecia areata. Over one hundred individuals have benefited from the fund since the start of the program in January 2004.  For more information visit www.naaf.org(http://www.naaf.org) .

Population(s) Served
Adults

For the last 37 years, the National Alopecia Areata Foundation has put on a four day conference that has changed the lives of the thousands of attendees.  The conference is for people of all ages who have alopecia areata or care about someone who has alopecia areata. It will provide you with all the information you need the latest medical and research updates to better understand and manage alopecia areata. It will also provide you with a wealth of support.  For more information visit www.naaf.org(http://www.naaf.org) .

Population(s) Served
Adults

Where we work

Accreditations

Better Business Bureau Wise Giving Alliance 2010

Better Business Bureau Wise Giving Alliance 2011

Better Business Bureau Wise Giving Alliance 2012

Awards

Gold Triangle Awards - Sports Illustrated "Making a Difference" Year in Sports Article 2009

American Academy of Dermatology

Gold Triangle Awards - Expanding Educational Borders with Spanish Documentary 2008

American Academy of Dermatology

Gold Triangle Awards - NAAF Celebrates 25 Years 2008

American Academy of Dermatology

Gold Triangle Award - Alopecia Awareness Day on the Hill 2008

American Academy of Dermatology

Gold Traiangle Award - Charlie's Angel Campaign 2005

American Academy of Dermatology

Affiliations & memberships

Better Business Bureau Wise Giving Alliance - Organization 2010

Better Business Bureau Wise Giving Alliance - Organization 2011

Better Business Bureau Wise Giving Alliance - Organization 2012

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

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.

NAAF endeavors to find potential treatments and a cure for alopecia areata. NAAF also strives to educate as many as possible about alopecia areata including our legislators, while providing support to all those with the disease as well as their loved ones.

NAAF’s Alopecia Areata Treatment Development Program leverages the building blocks already in place to accelerate research. The driving focus will be the facilitation of clinical trials for potential treatments, while sustaining attention to the root causes of the disease to find a potential cure. The overall strategies of the TDP going forward are:

1. Host NAAF sponsored Research Summits to distill learning from recent discoveries and focus future research initiatives that have the highest probability to yield potential treatments and to chart the path forward on an ongoing basis.
2. Make strategic investments in promising research based on shared knowledge from the research summits and through ongoing peer review. Be opportunistic in identifying and funding research on an ad hoc basis that emerges in the rapidly changing field of immunology.
3. Sustain and grow the Alopecia Areata Registry, Biobank and Clinical Trials Network (the Registry) to enable, facilitate, and accelerate clinical research.
4. Raise the profile of alopecia areata as an accessible autoimmune disease to study, make key strategic contacts, draw new researchers to the field, and increase awareness of NAAF as a valuable strategic research partner by participating in and sponsoring relevant scientific meetings.
5. Continue to focus on organizational planning, policy development and implementation, including solid business plans and action plans for guidance and review. Sustain key support resources including key contract research staff, communications resources/personnel dedicated to plan implementation.

NAAF guides the planning and promotion of awareness and fundraising events throughout the year, with emphasis on the Alopecia Areata Awareness Month of September. These events increase the public profile of alopecia areata as they better educate the general public about the disease. NAAF’s Alopecia Areata Legislative Liaisons strive to build and maintain a Congressional environment that is knowledgeable about alopecia areata, sympathetic to the needs of the alopecia areata community, well-versed on the need for further research, and disposed toward continued or increased funding for such investigation. The overall strategies of the Legislative Liaisons are:

1. Contact their congressional representatives whenever there are current legislative issues involving alopecia areata, particularly those that pertain to research funding or insurance coverage for those with alopecia areata.
2. Meet with their congressional representatives at both the local and national level to keep the legislators apprised of those issues and legislation most critical for the alopecia areata community.

NAAF has a strong support network with groups in the United States and such countries as Argentina, Australia, Barbados, India, the Philippines and throughout Europe and the UK. This support helps provide morale and sense of community to those with alopecia areata and their families.

NAAF has a track record for trustworthiness, accomplishment, transparency, and devotion to its community that reaches back over four decades.

NAAF has a Scientific Advisory Council providing us the benefit of its members’ combined knowledge and connections to the research community.

NAAF has a library of resources - packets, brochures, newsletters, videos, DVDs, and school packs - we share free upon request, covering a wide array of topics about alopecia areata. These materials are distributed to health professionals, as well as those affected.

NAAF has a committed staff with combined decades of experience helping those with alopecia areata, along with 140 volunteers in 138 cities.

NAAF has an informative website, Facebook page and Twitter feed.

NAAF has a nation-wide pool of 100 Legislative Liaisons who actively advocate on governmental issues most critical to the alopecia areata community.

Scientists identified genetic variations associated with the development of alopecia areata. It has been discovered alopecia areata shares more genetic similarities with other autoimmune diseases (rheumatoid arthritis, type 1 diabetes and celiac disease) than with other strictly hair loss-related diseases. This finding not only identifies potential targets for alopecia areata therapy, but suggests a shared disease mechanism that could help scientists study the immune pathology and develop treatments for all four diseases.

In 2012 following successful visits on Capitol Hill, alopecia areata was selected as one of 39 out of 12,000 known diseases for targeted assistance through the Food and Drug Administration’s Patient-Focused Drug Development initiative.
In June 2013, the National Institutes of Health’s (NIH) announced that NIH scientists and their colleagues have discovered that a gene called BACH2 may play a central role in the development of autoimmune diseases. Since alopecia areata is the most common autoimmune disease – and there are currently no FDA-approved treatments for it -- these findings are of great interest as they point to another promising avenue of research for developing an effective therapy for this disease.

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

    Electronic surveys (by email, tablet, etc.), Paper surveys, Community meetings/Town halls,

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

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, 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,

  • What significant change resulted from feedback?

    We implemented a toll free hotline now available to all who need support or information on our services. We produced, recorded and aired a "broadening awareness of alopecia areata PSA" featuring one of our star community members Joshua Dobbs, an NFL Quarterback, Aerospace Engineer and Alopecia Advocate. Joshua has alopecia areata. https://tinyurl.com/JoshDobbsPSA

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

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

    We collect feedback from the people we serve at least annually,

  • What challenges does the organization face when collecting feedback?

    We don't have any major challenges to collecting feedback,

Financials

NATIONAL ALOPECIA AREATA FOUNDATION
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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 ALOPECIA AREATA FOUNDATION

Board of directors
as of 3/3/2022
SOURCE: Self-reported by organization
Board chair

Ann Hollins

No Affiliation

Term: 2021 - 2023

Deirdre Nero

Ann Hollins

Jim O'Connell

Bonnie Chong

Salman Hussain

Tyrone Folliard-Olson

Amanda Wagner

Ann Hedges

Simon Rubenstein

Jonelle Massey

Bob Flint

Maureen McGettigan

Wendy Yu

Ron Saca

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 ? Yes
  • 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? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 03/03/2022

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 without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

Disability