Spotlight on Community Member Keya Trammell

In honor of Black History Month, we wish to spotlight community member, Keya Trammell.  Diagnosed with alopecia totalis at the age of 2, Keya’s resilience meant that hair loss was not going to prevent her from pursuing a successful career as a jazz-pop vocalist.  Growing up in South Suburban Illinois, Keya was sometimes bullied because of her alopecia totalis, but she credits music for making her feel whole.  Her 2020 video for the song “Double Rainbow” features Keya removing her wig in front of her boyfriend.  Fans told Keya she made them feel confident. “I realized that I should take on the responsibility of being an artist who makes herself vulnerable by showing her truth.”  Keya adds, “When people say, ‘I’m sorry you have alopecia,’ my response is, ‘Alopecia has been a blessing to me.’”  

Keya has been a strong advocate for the alopecia areata community by being an active member of NAAF’s Legislative Liaison program.  In September 2022, she was part of a select group of advocates who went to Capitol Hill to speak on behalf of the alopecia areata community.  

The NAAF family is so fortunate to have Keya Trammell as a leader for our community. 

NAAF Welcomes New Development VP

NAAF is proud to announce Robbie Baker as our new Vice President, Development.  

Robbie comes to NAAF after more than 25 years working on behalf of adults and children living with life-threatening and chronic medical conditions. He has held progressively responsible positions in fundraising and not-for-profit management including national leadership roles at organizations like the National Multiple Sclerosis Society, the Make-A-Wish Foundation, and the Leukemia & Lymphoma Society.

Robbie’s fundraising expertise includes designing and implementing comprehensive campaigns through individual major giving, corporate sponsorships, foundation partnerships, cause marketing, annual campaigns, special events, and peer-to-peer fundraising. For the past three years, he has served as vice president and chief development officer of the Brain Injury Association of America. 

Robbie first learned about alopecia areata five years ago when his daughter, Emma, was diagnosed with alopecia universalis. Emma’s dermatologist introduced the family to NAAF and from there, as Robbie notes,”we had hope and Emma began to understand that she has choices.” Robbie looks forward to helping NAAF in its efforts to remove stigma, increase understanding, and, of course, develop the financial resources necessary for a thriving national organization.

Research Survey Opportunity

Take part in a new research survey exploring the impact of alopecia areata on your intimate relationships and quality of life.

A research study being conducted by the University of California San Francisco (UCSF) is seeking to understand more about how alopecia areata impacts quality of life and intimate relationships. If you are at least 18 years old and have been diagnosed with alopecia areata by any physician, your participation in a 10-minute online survey would be greatly appreciated. The investigators hope that the information gathered in this research survey will help improve the care patients receive for their alopecia areata.

Participation is voluntary. Deciding not to participate will not affect medical care. The survey will be anonymous. Your name or other personal identifiers will not be collected. For more information, contact Joy Jin at Joy.Jin@ucsf.edu.

New Webinar Coming in March

From left: Amy Gibson, Kathleen Leonard and Georgia Van Cuylenberg 

Join NAAF for its next webinar, “The Good, the Bad and the Itchy: Managing the Wig Process and Cosmetic Challenges in Alopecia Areata,” on Thursday, March 9th at 7:00pm ET/ 6:00pm CT/ 4:00pm PT. Our presenters will be Amy Gibson, Kathleen Leonard, and Georgia Van Cuylenburg.  

Amy Gibson, who has alopecia universalis, has spent 25 years helping others with alopecia areata in choosing and managing the wig process along with the cosmetic challenges of hair loss. From picking your familiar style, the correct fit and the right color, to understanding how to create the authenticity and discretion needed for peace of mind while on this journey, Amy will share from her rich experience.  

In this webinar, Amy, along with fellow women with alopecia areata, stylist Kathleen Leonard and community member Georgia Van Cuylenburg, will offer the inside scoop on what has really worked for herself and thousands of her clients.

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.

Support Group Leader Spotlight – Harris Roach

NAAF’s support group network provides individuals with alopecia areata and their families, a safe, comfortable, and trusting environment in which to share their personal experiences with this challenging disease.

Volunteers like Harris Roach make these support groups possible. She is the Support Group Leader for Atlanta, Georgia. Harris was diagnosed with alopecia areata at the age of 12. She learned about NAAF after feeling helpless and searching on Google to look for support. Despite her own personal struggle, Harris chose to support others. “I can relate to a lot of the struggles,” explained Harris. “And being a Support Group Leader has also had a very positive impact on my life. I have found a lot of value in helping others, but also getting to be around people who go through similar struggles makes me feel like I’m not alone on this journey.” Harris also confessed that being a NAAF Support Group Leader is one of the most rewarding positions in her life so far.

NAAF has support groups all over the world. Visit NAAF’s website calendar of events to find support group meetings in your area. There are many cities and towns across the country without support groups. If you would like to be a volunteer Support Group Leader like Harris, please email support@naaf.org.

#AlopeciaAreataIsNoJoke: 2023 Oscars
on Sunday, March 12

The 2022 Academy Awards was a defining moment for our community, creating a global tidal wave of attention, conversation, and curiosity about alopecia areata. As the world anticipates this year’s Oscars, the discussion has already turned to the event witnessed on last year’s global stage and similar opportunities to educate the public, support individuals and families living with the disease, and reduce stigma. The NAAF community can help by promoting the #AlopeciaAreataIsNoJoke campaign. Please consider the following in the coming weeks:

• Direct people you know to www.naaf.org to check out the exciting website update coming soon.
• Encourage others to donate so that NAAF can continue to shine the light on alopecia areata.

2023 Conference – Save the Date!

Make sure to save the dates for the 38th NAAF patient conference in Denver, CO, and tell us what and who you’d like to see at this or a future conference (this is not a guarantee we’ll be able to fulfill every suggestion!).

Reaching New Summits Together
Friday, June 30 – Sunday, July 2, 2023 
More details to come soon!

Donate Now and Change a Life Forever!

 Make a life-changing gift today! 

Gary Sherwood
Communications Director