Annual Alopecia Areata Conference
Bringing the Heat to the 2018 NAAF Conference!
How hot was it in Scottsdale, Arizona, during the NAAF conference? Day 1, Thursday, June 28 saw thermometers bubble at 106 degrees. If you stepped outside the air-conditioned confines of the Hyatt Regency it felt like the sun’s blaze, along with a few dozen heat lamps, was focused solely on you. And yet, that was nothing compared to the heat being generated inside by 691 attendees, including 288 VIPs (i.e. those attending for the first time), who ranged in age from 1 to 78 and hailed from 41 states and 5 foreign countries—Canada, Ireland, Italy, Australia, and France. A total of 62 adults and 40 kids were able to attend with the help of scholarships. People came from many places, many backgrounds, but they all brought an enthusiasm and determination to learn and grow, to empower themselves and others, and to just enjoy this time together. Scottsdale might have been hot, but it was the alopecia areata community that brought the heat!
Young adults brought the heat to panels and workshops custom-tailored for them like “Become an Alopecia Areata Youth Mentor,” “Young Adults and Alopecia Areata,” “Young Adult Perspectives,” and “The Power of Us: Become a Social Media Ambassador.” NAAF has redoubled its efforts to work closely with 17- to 30-year-olds so they may better share their experience and wisdom with younger children, parents and peers. Our most sincere gratitude goes to Ebony Jean, Nell Sanders, Brittany Angerhauser, Kylie Clownie, John Frain, Cara Puccini, Shayna and Simon Rubenstein and Greg Slaton for providing such valuable information in their respective panels and sessions.
Of course, there were plenty of opportunities to learn how to address specific issues related to alopecia areata. At its heart, the NAAF conference is about support, and this year we were proud to unveil several exciting new support sessions, including “Moving Beyond the Alopecia Areata Blues,” facilitated by a panel with Reuben Greenwald, Matt Kelley, Joanne Pappas Nottage, Daniel Scali, and Claire Foster Theusen; “And Then There Is Us,” facilitated by Bob Flint and Ann Hedges; and the “Men’s Poker Challenge,” facilitated by Paul Marino and Fred Wahl. These were in addition to proven favorites such as “Where Are the Psychologists?,” “Dating and Alopecia Areata,” and “Wigged Out and Loving It.”
Those wishing to learn more about the state of alopecia areata research were brought up to date by NAAF’s Chief Scientific Officer, Dr. Natasha Mesinkovska, who addressed questions about less established treatments with a presentation that was as informative as it was entertaining. Natasha also served on the “Ask the Experts” panel, which included Jessica Lin and Drs. Leslie Castelo-Soccio, Richard Long, David Norris, and Jerry Shapiro. (Turns out “Dr. Natasha” has many talents, as she also assisted our longtime DJ, Communications Director Gary Sherwood, spinning tunes at the conference dance on Saturday night!)
After a teaser opening, attendees had the privilege of hearing one of three in-depth presentations by doctors, aka “Doc Talks”. Two such talks focused on dermatologic treatment: “The Clinic Visit in 2018: Current Treatments for Alopecia Areata” by Dr. Maria Hordinsky provided a detailed assessment of the risks and benefits of current and evolving off-label treatment options; “Pediatric Alopecia Areata: Treatment Options for Children” by Dr. Leslie Castelo-Soccio shared current approaches to treating alopecia areata in children and adolescents. Both Maria and Leslie shared the importance of tailoring treatment to the circumstances and desires of each patient and family. The third talk focused on research: “Genetics, Immunology and Targeted Therapies in Alopecia Areata” by Dr. Angela Christiano provided an update on genetic and immunological studies in alopecia areata. By working to elucidate the genes responsible for alopecia areata, Dr. Christiano’s research has helped to clarify the immunologic mechanisms behind this disease. NAAF also welcomed Industry Partners from Aclaris, Lilly and Pfizer to participate on a panel to discuss the importance of patient engagement and incorporating the patient voice into treatment development.
Our Awareness & Advocacy workshop is always enlightening for both the VIP and the veteran, and this year it was even more so, as we were joined by Representative David Schweikert (R-AZ) whose district includes Scottsdale. The congressman had just flown in from DC and, with young daughter in tow, was kind enough to not only give candid advice about how and when to meet with officials, but to sit for a meeting with Legislative Liaison Wendy Yu and her 13-year-old daughter Allison Ma. Wendy was instrumental in getting the congressman to not only attend the conference but agree to co-sponsor H.R. 2925, a bill that would provide coverage for cranial prosthetics (wigs) as durable medical equipment under the Medicare program. Earlier that same afternoon, Allison herself gave a presentation to her peers in the Children’s Conference Camp about how she’s met and spoken with legislators back home in the Bay Area.
Without question, this year’s guest speakers brought the heat! Liz DeCarlo, our support group leader in Wilmington, Delaware, delivered an emotional presentation in our opening session about discovering her own courage after being selected as a panelist for 2017’s FDA meeting on alopecia areata. Legislative Liaison and Youth Mentor Ebony Jean of Jackson, Michigan, spoke in Saturday’s General Session about the world that’s opened up for her since coming to terms with her condition and getting involved with NAAF. The mother-daughter team of Paula and Rosie Quinn of Chicago, Illinois, charmed the entire Closing Session discussing how the family started their scarf and cape business, Coming Up Rosies, as a way for 8-year-old Rosie to not only claim her power but to empower other children like herself. And actor Anthony Carrigan (Gotham, The Flash, Barry) made himself available to visit our Children’s Conference Camp in addition to speaking at the Closing Session. His presentation on moving beyond the fear of his condition thus freeing the fire within to pursue his acting dreams elicited tears and cheers.
Molly Tuttle, who was named the International Bluegrass Music Association’s Guitar Player of the Year winner for 2017 and who herself has alopecia areata, came straight from her debut at the Grand Ole Opry to perform live before the Opening and General Sessions. You can hear a sample of Molly’s music as it provides the soundtrack for our conference highlight video.
A total of 136 NAAF baseball fans had the opportunity to see the Arizona Diamondbacks host the San Francisco Giants on Friday night. On Saturday morning 396 conference attendees in bright red t-shirts participated in the traditional Tortoise & Hair™ Conference Walk, raising an astounding $50,400 (and still counting!) for NAAF’s continuing efforts in research, awareness and support. And Saturday evening featured what many have called our “best conference dance yet,” the “Groove Is In the Heart” ’90s Dance Party (thank you Ebony Jean for the suggestion!).
Every conference is special in its own way. In DC, it was the thrill of taking our message to our elected officials. In Miami, it was the spirit of the new, the boldness of the young, infusing so many of our new presentations. In Scottsdale, it was community members celebrating the value of community engagement, from meeting with the Food and Drug Administration in order to help guide research design, to supporting our younger people through Youth Mentoring. And in this celebration, they inspired other community members much like themselves. They brought the heat—and we’re cookin’ now!
See you next year in Seattle, Washington, Thursday, June 27th – Sunday, June 30th, 2019!
Conference Highlights Video