Alopecia Areata Language in Omnibus Bill

Representative Ayanna Pressley (center) with NAAF Legislative Liaisons in Washington, DC.

The recently passed congressional Omnibus FY 2023 Appropriations bill includes the following language created by by Representative Ayanna Pressley (D-MA):

Alopecia Areata.—The Committee notes the importance of research into autoimmune skin conditions such as alopecia areata. The Committee requests an update in the fiscal year 2024 Congressional Justification on research initiatives into this condition and opportunities to advance research.

Mental Health Impact of Alopecia.—The Committee notes recent events that have highlighted the effect on an individual’s mental health because of alopecia. The Committee encourages the National Institutes of Mental Health (NIMH) to work with key stakeholders to advance research and resource development aimed at understanding this connection and opportunities for innovative discovery.

Racial and Ethnic Disparities in Alopecia.—The Committee notes the disproportionate effect of alopecia on people of color, specifically women. The Committee encourages National Institutes of Minority Health and Health Disparities (NIMHD) to collaborate with relevant Institutes and Centers, such as the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), and relevant stakeholders to identify key research areas of concern.

The included language is important as it demonstrates Congress is not only serious about finding new treatments and a cure for alopecia areata, but learning more about the mental health impact the disease has, and its disproportionate effect on minority communities. The language also reinforces the argument that alopecia areata is not simply a cosmetic condition but a serious autoimmune disease worthy of insurance coverage for wigs and treatments.  

Treatment Development Program Impact Report

Read how NAAF’s Treatment Development Program played a significant a 12-year role in the research, breakthroughs, and clinical trials that led to the first-ever FDA-approved treatment for alopecia areata.  It’s all here in the 2022 Treatment Development Program Impact Report.

NAAF Awards Two Grants
 For Pediatric Alopecia Areata Research

NAAF is pleased to announce that it has awarded two grants to further research into alopecia areata in children and adolescents. Each recipient of the Pediatric Alopecia Areata Challenge Grant will receive $50,000 for a 12-month investigation.

NAAF partnered with the Pediatric Dermatology Research Alliance (PeDRA) to launch the Challenge Grant.

Fundraiser a Rockin’ Success  

Guitar-slinging Mia Miller and her parents, Reed and Jill, held a hugely successful fundraiser for NAAF by selling t-shirts with a graphic of Mia shredding on her axe with the logo “You can rock alopecia.  And…you’re awesome!”  Dubbed the “Awesome Alopecia Rocker” by local TV show, Living Well, Mia and her fundraiser brought in $10,000 in donations.  You can do the same!  Just find what you love and do it for NAAF.  Contact us at info@naaf.org to learn more.  And watch Mia’s Living Well appearance Here>>. 

Next Webinar:  Patient Guide to Clinical Trials and Drug Development

Danielle Quarles

NAAF is hosting its next live webinar, Patient Guide to Clinical Trials and Drug Development: Phases and Terminology Explained! on Wednesday February 15th at 7:00pm ET/ 6:00pm CT/ 4:00pm PT.

Have you read announcements for clinical trials but don’t quite understand what they mean? Do you want to feel comfortable advocating for yourself when discussing clinical trial options with your doctor? Join us to learn about drug development including how clinical trials are planned, the phases they go through, and the role that patients play in clinical trial conduct. We will cover questions to ask your doctor, things to consider when evaluating whether to participate in a trial, and how your participation could move alopecia areata treatments closer to FDA approval. This presentation will focus on clinical trials for adults.

Speaker Danielle Quarles has 20 years of experience in clinical research and drug development. She is a senior director of clinical operations in the biotech industry and has two children with alopecia areata.  

This webinar is part of NAAF’s You Are Not Alone: Education and Empowerment Webinar Series. NAAF gratefully acknowledges support for this webinar series from Eli Lilly and Company.

2023 Student Internship Awards
 Applications Now Open

NAAF is pleased to announce that applications for Student Internship Awards for 2023 are now open. These awards support students (undergraduate, graduate, or medical), residents, or fellows interested in conducting research focused on alopecia areata. The goal is to enable promising young scientists and physicians to hone their research skills and further their careers as investigators focused on improving the lives of those living with alopecia areata.

Applications related to all aspects of alopecia areata are strongly encouraged, including basic science, translational research, burden of disease, epidemiology, and clinical research. Awardees will receive $3,000 as salary/stipend. The deadline to apply is February 15, 2023.

View the Student Internship Awards announcement and application instructions here. 

NAAF’s Youth Mentoring Helps Both Kids and Parents

Youth Mentor Ryan S.

In honor of January being National Mentoring Month, we want to highlight one of NAAF’s most important volunteer programs - NAAF’s Youth Mentor Program. This vital program connects children living with alopecia areata who are experiencing an emotional impact from their diagnosis or who are simply wanting to meet others like them. 

The program helps children like Alaina. Her mom, Kamilee, enrolled her in the program when she saw how Alaina was struggling to accept her hair loss. As much as Kamilee wanted to help her daughter, she simply couldn’t. “Alaina kept telling me I didn’t understand, and she was right. I can’t completely understand.” 

To help kids like Alaina, we have Youth Mentors like Ryan who have been through similar situations and offer the support they themselves yearned for. “I want to be able to give back to younger kids that might be going through the same thing I am,” explained Ryan. “I want the mentee to have someone who looks like them and help them feel more normal.” 

NAAF has Youth Mentors nationwide who are anxiously awaiting to be matched with a mentee. Email support@naaf.org if you’re interested in becoming a mentee or enrolling your child as a mentee.

NAAF Welcomes New Project Coordinator

Dominique Seck

NAAF is proud to announce Dominique Seck as our new Project Coordinator. Prior to NAAF, Dominique worked for Nevada Office of Minority Health and Equity to decrease health disparities among the state’s marginalized populations. Additionally, she has worked in non-profit organizations in Nevada and New York. She received her Bachelor’s degree in Ethnic Studies and French from Bowling Green State University.

Born and raised in Ohio, Dominique recently relocated to Oak Park, Michigan with her husband and two young sons. She has been living with alopecia areata for over 15 years.

2023 Conference – Save the Date!

Make sure to save the dates for the 38th NAAF patient conference in Denver, CO
Reaching New Summits Together
Friday, June 30 – Sunday, July 2, 2023 
Details to come soon!

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Gary Sherwood
Communications Director