A Conference You Can’t Miss!

Keya Trammell and Neil Harris

Reaching New Summits Together, the latest and dare we say greatest NAAF patient conference yet, from Friday, June 30 - Sunday, July 2, at the Grand Hyatt Denver, is going to be a bold mix of new ideas and fresh spins on the traditional conference.  Longtime conference MC, Maureen McGettigan, will be joined by a new co-host!  Recording artist, Keya Trammell, will perform! Plus, our new DJ, Neil Harris, will play your favorites at the Saturday Night Dance!  Take advantage of early bird pricing and register today!   

Unable to attend this year’s conference but would still like to help someone else attend? Consider making a donation to the conference scholarship fund HERE.

Your Questions Answered! More on Managing the Wig Process and Cosmetic Challenges in Alopecia Areata

Amy Gibson, Kathleen Leonard and Georgia Van Cuylenburg

NAAF is hosting its next live webinar, Your Questions Answered! More on Managing the Wig Process and Cosmetic Challenges in Alopecia Areata, on Tuesday, May 16th at 7:00pm ET/ 6:00pm CT/ 4:00pm PT. 

You asked, we’re answering! We received an overwhelming number of questions during our webinar, The Good, the Bad & the Itchy: Managing the Wig Process and Cosmetic Challenges in Alopecia Areata.  Join us to hear some answers and learn more! Even if you missed the first session, tune in for new tips and techniques for wigs, eyebrows, and eyelashes. 

Amy Gibson, Kathleen Leonard and Georgia Van Cuylenburg will address your questions and offer the inside scoop on what has really worked for them when it comes to wigs and cosmetics. Amy and Kathleen will also share their expertise on what has helped thousands of their clients.

This webinar is part of NAAF’s You Are Not Alone, Education and Empowerment Webinar Series, supported by Eli Lilly and Company.

If you missed any past webinars, you find the recordings at www.naaf.org/watch-learn.

Research News: New Clinical Trial Data
Published for Ritlecitinib

Members of the alopecia areata community may be encouraged by the latest clinical trial results for ritlecitinib, published on April 13 in the medical journal, The Lancet. Ritlecitinib is an experimental medication developed by Pfizer and is a member of a class of drugs known as JAK inhibitors.

The late-stage clinical trial evaluated how safe and effective ritlecitinib was among 718 patients (aged 12 and up) who have alopecia areata with 50% or more scalp hair loss. The study marks the first phase 3 trial of a JAK inhibitor for alopecia areata in adolescents. The study investigators found that after 24 weeks, participants who took 30 mg or 50 mg of ritlecitinib daily experienced significant hair regrowth compared to patients who took a placebo.

Ritlecitinib is currently under review by the U.S. Food and Drug Administration (FDA).  A decision from the FDA is expected during the second quarter of 2023.

Paid Research Survey – Your Input is Requested!

Virtue Research is gathering insights on a new treatment for alopecia areata and would greatly value hearing from the community. They are seeking U.S. parents of children (ages 12-17) who have been diagnosed with alopecia areata and adults living with alopecia areata to complete an online survey.  The survey takes approximately 25 minutes and can be completed via a computer/laptop or tablet. If you qualify and participate, you will be compensated $35 by check for your time (checks mailed out 2 weeks after the full study is closed). This survey is open until May 2nd.  

Three States Introduce Wig Coverage Legislation

Within the space of just two months, new legislation was introduced in Massachusetts (S.553), Maryland (SB0075), and New Hampshire (Revised Statute Section 415:18-d).  All three bills seek to provide insurance coverage for those with medical hair loss seeking to afford a cranial prosthetic (or wig).  (A fourth bill introduced in Virginia did not pass the state senate hearings.)  Legislative Liaisons, Legislative Mentors and other NAAF constituents in these states are being urged to contact their state senators and ask them to support this legislation.  The introduction of multiple bills in such a short time points to the dramatic growing awareness of alopecia areata taking place.  To learn more about our patient advocacy programs, please visit www.naaf.org/take-action.

New Teen Support Group for Girls

Mary Wills and Kate Zipperer 

Life as a tween or teen is hard enough, but if you add to that the loss of hair while trying to find a place in the world, it can be overwhelming. This is why NAAF launched its very first US virtual support group for teen girls. It’s a safe zone created exclusively for girls ages 12-17 where they can talk with other girls their age who understand what they’re going through. Whether they discuss typical teenage topics or their daily struggles, this support group will help bring these teen girls together as they navigate life with alopecia.

We have two excellent support group leaders facilitating these monthly meetings. Mary Wills is a mental health therapist and licensed social worker who has experience treating the psychological needs of patients with chronic health conditions. Kate Zipperer is a medical student, who will be applying to dermatology residency next year and is looking forward to spending her life treating alopecia areata. 

This support group meets every third Monday of the month at 6pm CST. Parental consent is required before attending. To join this support group, please email Mary Wills.

Portrait of a Teen Fundraiser

Spring has sprung and with it are opportunities to support the alopecia areata community! John Tedeschi, a senior a Strongsville High School in suburban Cleveland, OH, won the annual Mr. Mustang competition. John directed the prize funds—almost $7,000—to NAAF to assist with research, advocacy, and support.

“Alopecia first became a part of my life when I was 11 months old. It took many hard years and doctor’s appointments for my parents to find a treatment that worked. I finally was able to grow hair but still get bald spots often. Winning this competition and being able to donate to such a great organization just means the world to me. People don’t realize how big of an impact hair has on one’s self confidence. Being able to help others who struggle with a disease that I’ve lived with my whole life is just so rewarding!”

NAAF is ready to support your community fundraising efforts. Stay tuned for more information about our new walk campaign coming this fall. Contact Robbie Baker today to learn more about how you can raise funds in your community just like John.

Thank You to Our Volunteers

April is National Volunteer Month, and we wish to thank NAAF’s volunteers who provide the alopecia areata community the support it requires and the advocacy it deserves.  Whether you are a Youth Mentor, Support Group Leader, Telephone Support Contact, Legislative Liaison, Legislative Mentor, or Health and Research Ambassador (or any combination thereof!) the role you play is essential.  You have our most profound gratitude.   

Donate Now and Change a Life Forever!

 Make a life-changing gift today! 

Gary Sherwood
Communications Director