No Joke!  We’ve Seen an Unprecedented
 Spotlight on Alopecia Areata

Dear Friends,

The weeks following the Oscars ceremony, where a joke about alopecia areata ignited a firestorm of media attention, saw NAAF responding to a multitude of interview requests from local newspapers to CBS News, Second Opinion with Joan Lunden, and the prestigious PBS NewsHour, and in every interview and appearance, we reminded the audience that alopecia areata is no joke.   

Some Coverage Highlights:

• PBS NewsHour
• CBS News
• Second Opinion with Joan Lunden

Please let us know if you saw alopecia areata discussed on your local news!

Our First In-Person Conference in 3 Years
 Needs Just One Thing – YOU!

It’s been 3 years since our community last gathered in person, and we miss you!  

Join us at A Community Reunited, the 37th Annual NAAF International Conference, scheduled for Thursday, June 30, to Sunday, July 3, 2022, in Washington, D.C. 

• You’ll see friends you haven’t seen in years, as well as make new ones.
• You’ll hear the very latest in research news as we expect new treatments coming to market very soon!
• You’ll represent the community in our nation’s capital now that alopecia areata awareness is greater than ever.
• And so much more!

The Conference will have so much to offer but it needs YOU to be complete! 

REGISTER NOW at conference.naaf.org/naaf2022 and be sure to reserve your hotel room at Hyatt.com. 

NAAF’s 2021 Annual Report Now Available

NAAF is proud to share its new annual report 2021: A Year of Resilience.    Relive all the accomplishments of NAAF and the alopecia areata community through last year in this review of support, advocacy and research endeavors.  

Thank You, Dr. Natasha!

Natasha Mesinkovska, MD, PhD, who has served as NAAF’s Chief Scientific Officer (CSO) since 2015, has decided to close her tenure in this position and, we’re happy to announce, has agreed to join NAAF’s Research Advisory Council as a volunteer member with her peers. 

Natasha is a respected scientific leader for the organization, a trusted source of information and a beloved friend to many in the community.  “Dr. Natasha” has a singular ability to present on all aspects of alopecia areata, its causes and severities, and current state of research, in a way that is uniquely accessible. 

Natasha leaves an important legacy at NAAF, having helped establish the Research Roadmap that has led to this pivotal moment when we anticipate the first FDA-approved drugs for alopecia areata coming to market.  We are entering a period when more treatments will become available, and we owe a great debt of gratitude to Natasha for her tireless work on behalf of NAAF and alopecia areata patients.

Encouraging Research Development

Big news about alopecia areata treatment: A recent study published in the New England Journal of Medicine reports on hair regrowth in a Phase 3 clinical trial of the Janus kinase (JAK inhibitor) baricitinib. About one in three patients were able to regrow hair in the trial.  The study's lead author was Dr. Brett King, MD, PHD, Associate Professor of Dermatology, Yale University School of Medicine, and a member of NAAF's clinical Research Advisory Council. Dr. King will be a speaker at NAAF's patient conference. Learn more at news.yale.edu.

New Legislative Priorities Unveiled for 2022-2023

NAAF Communications Director, Gary Sherwood, and Health and Medicine Counsel Managing Partner, Philip Goglas, hosted an informative webinar outlining NAAF’s legislative priorities for the next 12 months, which include getting support for greater research funding, and legislation to provide Medicare coverage for wigs and access to treatments.  

To learn more about our Legislative Liaison and Legislative Mentor programs, please contact Gary Sherwood.   

New Patient Videos Feature Experience and Advice 

We can always learn and gain confidence from those who have shared similar experiences to our own. A selection of new videos featuring a diverse group of alopecia areata community members provides that opportunity. Bob Flint, Rosie Quinn, Stephanie Yuen, Paige Moore, and Tyrone Folliard-Olson share their alopecia areata experiences, and their advice to others who are also going through journeys not unlike their own.  And Jonelle Massey discusses her experience and lessons learned from being a parent of a child with alopecia areata.

These videos are made possible with the generous support of Eli Lilly.

NEW - NAAF Webinar Series! 

NAAF is pleased to announce the launch of a new free webinar series, You Are Not Alone: NAAF Education and Empowerment Webinar Series. We recognize the crucial need for the patient community to interact with medical professionals and experts with experience on topics specific to alopecia areata.  In the coming months, NAAF will present 12 webinars on a variety of relevant topics presented by a diverse set of speakers that will empower and educate our community members wherever they are on their journey with alopecia areata.  

The series kicks off with our first live webinar, “Resilience, Courage and Confidence” featuring Shamsha Damani and Sofia Martinez, on June 9th at 6pm CST.  Shamsha was diagnosed with alopecia universalis since 2013 and serves as a support group leader and Health and Research Ambassador (HARA)  for NAAF. Sofia is an engineer and the founder of “Oh Hell Yeah I Am,” a Life Coaching company. She has dealt with alopecia since she was 6 years old. In this webinar, we will work through the notions of resilience, courage and confidence and identify practical tools to become resilient, practice courage and develop confidence so we can feel good in our own skin.  The webinars are free, but we ask that you register here to attend. 

We are grateful for the generous support of one of our industry partners, Eli Lilly, for sponsorship of this webinar series.

Anyone Can Hold a Facebook Fundraiser!

A Facebook Fundraiser is a fun and easy way to raise money! Facebook donates $5 to NAAF every time a user selects this feature and has eliminated the fees for nonprofits, so 100 percent of donations made through this platform go directly to NAAF.

Create a Facebook fundraiser by following these steps:
1.    Visit NAAF’s Facebook page: https://www.facebook.com/NAAFUSA.
2.    Click on the “+ Create a Fundraiser” button under the timeline photo. 
3.    Select NAAF as the nonprofit.
4.    Specify the amount of money you want to raise.
5.    Choose the date you want your fundraiser to end.
6.    Add a title and description for your fundraiser.
7.    Pick a cover photo or video.
8.    Post to your Facebook page.
9.    Share with your friends and family!

Please notify NAAF Support and Education Director, Judy Williams, when you set up a fundraiser, so your efforts can be properly acknowledged.

Survey Needs Participants

Parents of children diagnosed with the autoimmune disorder alopecia areata are invited to share their experience by participating in a survey for a nursing research study. This study is being conducted by Sarah Caro, PhD, CNE, RN, an Assistant Professor with Towson University's Nursing Department in the College of Health Professions in Towson, Maryland.

The purpose of this survey is to gain information about the parental quality of life for parents of children diagnosed with alopecia areata. The knowledge gained from this survey study will provide a foundation for future studies exploring methods to support families living with alopecia areata. This information will assist nurses, healthcare providers, and members of the general public and community gain a better understanding of the impact of alopecia areata on parents to identify support services and provide sensitive provision of healthcare services.

Individuals are invited to participate if they are an adult parent, 18 years of age or older, of a child diagnosed with alopecia areata. Participation in this study will involve completion of a survey questionnaire.

To learn more about this survey, please contact Sarah Caro by email  or by phone: 443-299-9272.