Put On Your Walking Shoes and JOIN US! 

We are so excited!  The Walk for Alopecia™ movement and momentum continues to build. So, we are raising the overall Walk goal one last time to $500,000.  Wowza!  

This Saturday, September 30th, join our nationwide movement of individuals, families, teams, companies, and entire communities taking part in NAAF’s Walk for Alopecia™. We need YOU! Walk where you are or join us at the inaugural Walk in San Francisco. Register or donate here and help us shine a bright light on alopecia as we bring Alopecia Areata Awareness Month to a grand climax!

Big shout out to Team Sage Wisdom who Walked for Alopecia this past weekend.  We are loving their enthusiasm! 

New Webinar: Alopecia areata treatment updates and lessons learned from recent clinical trials

NAAF is hosting its next live webinar, Alopecia areata treatment updates and lessons learned from recent clinical trials, on Wednesday, October 25th at 7:00pm ET/ 6:00pm CT/ 4:00pm PT. This webinar will be presented by Dr. Brett King, Associate Professor of Dermatology at the Yale School of Medicine.

With a second FDA-approved treatment announced in 2023, there is new information to share on treatments for alopecia areata, how they work, and what we’ve learned about the disease from clinical trials. Join Dr. King as he discusses these topics and answers your questions.

If you’re not able to join live, you can still catch the webinar on-demand on NAAF’s website.  Our You Are Not Alone: Education and Empowerment Webinar Series covers a variety of relevant topics presented by medical professionals and experts that empower and educate community members wherever they are on their journey with alopecia areata. All webinars are recorded and available on our website for you to view at your convenience.

NAAF gratefully acknowledges support for this webinar series from Eli Lilly and Company, Pfizer, and Sun Pharma.

Advocating on Capitol Hill and at Home!

Earlier this month, 48 handpicked Legislative Liaisons and Legislative Mentors, family members and NAAF staff spent a Day on Capitol Hill advocating for issues important to the alopecia areata community.  Reminding our lawmakers that it’s not just hair, these advocates underscored the impact of alopecia areata before asking their House members and senators to increase funding for the National Institutes of Health (thus increasing funds for research), and cosponsor two bills which would respectively redesignate wigs as durable medical equipment and reform step therapy.

But you don’t have to go to Washington, DC to advocate!  We are thrilled to announce within a few short weeks we will unveil a new way to advocate that will make reaching out to your legislators easier than ever.  It will take you less time than it takes to read this email!  More to come.   

NAAF’s Legislative efforts are supported by Eli Lilly and Pfizer 

Celebrating Three Decades of Dedication: Honoring Jeanné Rappoport!

For many years, if you called the NAAF office asking about a support group, looking for resources, inquiring about the annual conference, wanting to volunteer, or seeking an empathetic ear, you likely spoke with Jeanné Rappoport.  Jeanné joined NAAF in 1993 as an Administrative Assistant to then-CEO Vicki Kalabokes, when the Foundation was little more than them and a handful of volunteers.  Over the years, Jeanné planned 28 annual conferences across the country, as well as countless research summits, board meetings, advocacy trips to Capitol Hill, and other events for NAAF.  As her role expanded to include financial management, human resources, and other administrative oversight, she was promoted to Chief Administrative Officer.  Regardless of her role, her unwavering commitment to the alopecia community and strong work ethic is evident in all she does for NAAF.

During her tenure, Jeanné has been a part of, and witness to, the growth and evolution of NAAF and the changing landscape of treatment options, including two FDA-approved drugs for treatment of alopecia areata. 

Earlier this year, Jeanné announced her plans to retire at the end of October. We extend our heartfelt gratitude to Jeanné for her remarkable 30 years of service, dedication, and passion to NAAF and the AA community.  We will miss Jeanné and offer our best wishes for a happy retirement that includes enjoying her family and doing just about anything else she wants to do! 

If you have a special memory with Jeanné and would like to reach out, you can email her here.

Clinical Trial Announcements 

NAAF works to bring you postings about new clinical trials recruiting individuals living with alopecia areata.  To learn more about clinical trials and the latest listings, visit www.naaf.org/studies, and see the announcements below.

Clinical Trial Opportunity!

An ongoing clinical research study is currently recruiting Black and African American patients with alopecia areata for a study that evaluates the safety and effectiveness of an oral drug. Would you like to know more about this study? This study is testing a drug called baricitinib (the “study drug”) in people with alopecia areata. The purpose of the study is to learn how the study drug can help patients, particularly Black and African American patients with alopecia areata regrow their hair. You may qualify to participate in this study if you are 18 to 60 years for males (70 years of age for females), self-identify as Black or African American in race, have at least 50% scalp hair loss, and have been diagnosed with alopecia areata for at least 6 months.

This study will occur at multiple clinical trial sites throughout the United States. 

LEARN MORE ABOUT THIS STUDY HERE

Clinical Trial Opportunity!

What is the BRAVE-AA-PEDS Study?
The study is testing how safe and effective a study drug is for children and adolescents with severe AA. During the 36-week treatment period, participants will receive either the study drug or a placebo (a placebo looks like the study drug but does not contain active medicine). Those taking placebo will be offered the study drug in an extension period. To qualify for the BRAVE-AA-PEDS STUDY, participants must:

• Be at least age 6 and less than 18 years old
• Have severe AA for at least a year
• Have a current AA episode that has lasted at least 6 months
• Have tried at least 1 AA treatment, and it failed

There are additional qualifications which the study team would like to review with you.

LEARN MORE ABOUT THIS STUDY HERE

Clinical Trial Opportunity!

A clinical research study is looking for adults (18+) diagnosed with alopecia areata with 50% or more scalp hair loss. This study is investigating an oral (taken by mouth) study drug called farudodstat. The main purpose of the study is to see whether farudodstat, when taken twice a day for 12 weeks, can help people with alopecia areata grow hair and to find out if farudodstat is safe when compared to placebo (a pill that looks like the farudodstat tablet but has no drug or other active ingredient in it). 

Eligible participants will receive study drug for 12 weeks and placebo for 12 weeks. The study will last approximately 8 months and you will have to go to the study center for 11 scheduled visits. Participation in this study is at no cost to you. This study will occur at multiple clinical trial sites throughout the United States.

LEARN MORE HERE

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Gary Sherwood
Communications Director

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