NATIONAL ALOPECIA AREATA FOUNDATION
Programs and results
What we aim to solve
Our programs
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.
Treatment Development Program
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.
Ascot Fund
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) .
NAAF Annual Conference
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) .
Where we work
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
External reviews
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of advocacy contacts with government leaders
This metric is no longer tracked.Totals By Year
Population(s) Served
Chronically ill people
Type of Metric
Outcome - describing the effects on people or issues
Direction of Success
Increasing
Context Notes
Total number of Legislative Liaisons and Legislative Mentors. Advocating in 206 congressional districts in 42 states.
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Reports and documents
Download strategic planLearn 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?
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 supports research to find a cure or acceptable treatment for alopecia areata, supports those with the disease, and educates the public about alopecia areata.
What are the organization's key strategies for making this happen?
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.
What are the organization's capabilities for doing this?
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.
What have they accomplished so far and what's next?
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.
As of June 2022, Olumiant, a drug previously approved for rheumatoid arthritis, has been approved by the FDA for use in adults with severe alopecia areata.
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 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
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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
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What challenges does the organization face when collecting feedback?
We don't have any major challenges to collecting 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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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 ALOPECIA AREATA FOUNDATION
Board of directorsas of 06/26/2023
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
Maureen McGettigan
Wendy Yu
Ron Saca
Brett King
Shamsha Damani
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 ? 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
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: