Alopecia Areata’s Watershed Moment

Dear Friends,

No one saw this coming.  That singular moment at the Oscars ceremony where a joke about alopecia areata was answered in memorable if controversial fashion was like a bright light being switched on in a dark room, and suddenly everyone was talking about the disease.  In the days following, NAAF responded to a non-stop torrent of requests from media outlets great and small asking for interviews with patients, medical experts, and Foundation representatives, all wanting to know about alopecia areata and how those with the disease and their loved ones could find support and information (see below).  NAAF also responded to the Oscar incident with a statement on our website - Simply put - alopecia areata is no joke.

As the national and international media coverage continues,  please help us seize this extraordinary moment to amplify our message, educate the public, and support our community.  NAAF and the critical support, advocacy, and research we provide have never been more relevant.  Please donate TODAY.

"A Community Reunited"
NAAF’s 40th Anniversary and In-Person Conference

Register NOW for A Community Reunited, the 37th Annual NAAF International Conference, scheduled for Thursday, June 30, to Sunday, July 3, 2022, in Washington DC. 

This unforgettable experience — our first in-person conference since 2019! — will connect you with a network of people who share similar challenges to those you may face. Special guests and speakers along with many members in our community will offer inspiration, professional caregivers will share medical information and advice to help you better understand and manage alopecia areata, and expert researchers will detail the latest findings of NAAF’s Treatment Development Program. A panel of researchers and representatives of companies pursuing treatments will provide you with the extraordinary opportunity to directly address questions to the very people most intimately involved in the search for treatments and a cure for alopecia areata. This will be our first DC conference in six years, so we hope you can join us for this wonderful time of sharing, support and renewed advocacy.

New for ’22 - The Tortoise & Hair™ Conference Walk

We’re putting a new spin on the Tortoise & Hair™ Conference Walk that will provide you with the opportunity to see more of DC while raising much needed funds for NAAF. We have new Conference t-shirts for every participant and prizes for those who raise the most, so register today!  Your support is critical to NAAF’s ability to fund research and provide meaningful patient programs for our community. Please plan to join us.

The Justice League Brings Awareness to Legislation

The Alopecia Justice League, composed of Legislative Liaisons and Mentors in New York City, had a wonderful idea to raise awareness of H.R. 5430, legislation that would redesignate wigs as durable medical equipment eligible for Medicare assistance. They created a photo montage of alopecia areata community members with the message “Wigs Should Be a Choice Because Having Alopecia Isn’t. Support H.R. 5430.” And to draw attention to the montage and its message, who better to have in the lead photo but the bill’s co-lead, Representative Ayanna Pressley (D-MA) who generously took time from her busy schedule to take a couple of pictures holding up the bill number in front of the Capitol.  Thank you to the Alopecia Justice League members and the office of Representative Pressley for spreading awareness of legislation that has the potential to help so many in the alopecia areata community.

Empowered Through Photography

After seeing a striking photo of two women with alopecia areata we asked one of the photo subjects, Alice Luke, to tell us more about how and why the picture came to be: 

Meeting others with alopecia through NAAF has always been one of the most impactful ways for me to feel confidence and pride in having alopecia, and modeling has been a medium through which I express this pride to the world. However, in my daily life I’ve rarely had moments of sharing this experience with someone else. A dear friend and photographer, Miguel Perez, came up with this idea to gather me and another friend of his, Karesa McElheny, who also has alopecia. From the moment we all met up to shoot, it became such a joyful and celebratory experience. Overall, we want the shoot to express both the pride we have in our shared experiences as well as the empowering message that having alopecia is not mutually exclusive with anything you want to embody in your life. See these photos here.  For more information, please contact Karen Lee.  

NAAF’s Youth Mentor Program is Here for Your Child

NAAF’s Youth Mentor Program connects children ages 5-18 living with alopecia areata and their parents to dedicated Youth Mentors, young people who themselves have alopecia areata and wish to help others.  These qualified Youth Mentors provide support and guidance on dealing with the day-to-day challenges stemming from alopecia areata. Youth Mentors and the young people they help don’t need to live in the same town or city. Mentoring relationships can be just as effective online. There is no charge to enroll as NAAF's Youth Mentor Program is supported by donations from our community. To find a Youth Mentor for your child, or to become a Youth Mentor yourself, please reach out to NAAF Support and Education Director, Judy Williams.  

The Great Scorpion Trail Run – Five Years Running! 

Tim Irvine was only 5 when he was first diagnosed with alopecia areata, but it wasn’t until nineteen years later that he finally got to meet another person who had the disease. Because of this, he made a personal commitment to help raise awareness of alopecia areata by starting the Great Scorpion Trail Run. “I was amazed how much of a shell I still lived in before I began to share my story with people,” said Tim. “We are greatly humbled to be able to put on this race and use it as a vehicle to help more and more people learn about alopecia.” Through the years, he has met many others with alopecia areata, raising awareness about this disease while raising funds for NAAF. This year, Tim and his daughter Caroline held their fifth annual race — and not only did it raise $4,500 to help the alopecia areata community, but it also brought in over 250 participants and runners from 11 different states including Hawaii.

Do you have a fundraising idea in mind? We are here to help you launch it! Contact Judy Williams and she can help make your event a success.

Leave a Legacy 

You can help ensure the sustainability of NAAF’s research and patient support programs, and generations to come will benefit from your vision and foresight. Consider including NAAF in your will and estate plans or add NAAF as a beneficiary on your life insurance policy. To learn more about setting up your own legacy gift, please contact Kate Hanni, Chief Development Strategist.

Team Up ’22!

Phillies 2021 Team Up

Let’s get back to the ballparks and spread awareness of alopecia areata!

Now’s the time to reach out to your local baseball team, both Major and Minor League, and schedule a Team Up game for this season. Team Up games are a great way for our community members to get together and spread awareness of alopecia areata. Ask your team’s community representative what games they have available (preferably during the Alopecia Areata Awareness Month of September) and what they can do to help spread awareness.

Please contact me, Gary Sherwood,  with any questions.