Annual Alopecia Areata Conference
Our 2021 “Lunapecia” Conference was Out of this World!
The National Alopecia Areata Foundation’s 36th Annual Patient Conference, dubbed “Lunapecia,” brought our alopecia areata tribe back together again, combining fellowship with learning, empowerment, emotion, and just plain fun.
Last year, we had only a few short weeks to put together a one-day virtual conference. Once we made the decision to hold another virtual conference this year, we had several months to plan three days of the sessions and activities that only the NAAF conference can bring someone with alopecia areata and their loved ones.
The first part of planning any conference is coming up with a theme. Since we would again be virtual, that gave us the unique freedom to hold the conference from anywhere — so why not the moon? And Lunapecia was born! Next came planning the conference content. We asked community members and past conference attendees what they wanted to see and experience, and they gave us fresh ideas for new sessions and workshops to pair with returning favorites. This year we were able to space out (no pun intended) the sessions and presentations over three differently themed days: Friday was Advocacy (Speaking Up), Saturday was Research (Moving Forward), and Sunday was Support (Talking Together).
As in 2020, in the weeks leading up to Lunapecia’s “launch date” of Friday, June 25, we pre-recorded those presentations that did not require a live audience. Longtime Conference Emcee Maureen McGettigan and NAAF Communications Director Gary Sherwood surreally recorded both the welcome and farewell in the same session. Award-winning bluegrass guitarist and singer-songwriter Molly Tuttle, who has performed at every NAAF conference since 2017, recorded two songs for us straight from her hotel room while on tour. Actor Anthony Carrigan, who spoke at our 2018 conference in Scottsdale, again generously carved out time for a combination presentation and Q&A session while prepping for the third season of his HBO series Barry (for which he received an Emmy nomination in 2019). Inspirational speaker Sanah Jivani, who was originally slated to speak in-person at our ill-starred 2020 conference, instead delivered her stirring and empowering presentation this year and blew us all away during the recording session — so we knew she’d go over like gangbusters when her talk closed out Day 1.
The first day also gave us Board Chair Ann Hollins, along with fellow Board Members Salman Hussein and Tyrone Folliard-Olson, and Legislative Liaison Kate Ekman, speaking on NAAF’s refreshed Mission, Vision and Values (see below). Tyrone was also a presenter, along with Legislative Mentor Mikayla Mango, for our Advocacy Workshop, while veteran event planners McKenna Reitz, Tim Irvine and Josh Lang presented the Awareness and Fundraising Workshop. New for 2021 was a Social Media Workshop featuring Tik Tok celebrity Nico Roman (the chat room lit up when he came on!) along with Legislative Liaison and beauty influencer Ebony Jean and social media consultant Chris Mulinos. Also debuting this year was Two Ways to Help, Two Ways to Mentor, where attendees could hear from Legislative Mentor Peyton Hemann and NAAF’s newest staff member, Youth Mentor Program Manager Judy Mireles.
For many, the highlight of the conference is learning about the latest research developments. Researcher Sarah Caro, PhD, CNE, RN, gave a fascinating presentation on Exploring the Lived Experience of Alopecia Areata. Conference favorite Angela Christiano, PhD, spoke on Genetics, Immunology and Targeted Therapies in Alopecia Areata, while Maria Hordinsky, MD, focused on Current Treatments for Adults with Alopecia Areata. Leslie Castelo-Soccio, MD, PhD, likewise informed us on Treatment Options for Children, while Renee Thomason, DO, MSC, gave us a brand new presentation on Mindset, Diet and Lifestyle. Then followed the popular Ask the Experts and Industry Partners panels. Day 2 climaxed with NAAF’s Chief Scientific Officer, Natasha Mesinkovska, MD, PhD, delivering another informative and entertaining Research Update.
In addition to the wealth of prerecorded material, the conference included a wide array of live support sessions on Day 3. Conference vet Richard Long, PhD, led a valuable session on Child Development and Resiliency. Our longtime friend, actress-comedian Georgia Van Cuylenburg, led our first virtual kids support session, as well as a Q&A Session with 10-year-old patient advocate Rosie Quinn, who read from a book written by her mother Paula entitled “My Hair Went On Vacation.” Debuting as well was a session on Skin of Color with Alopecia Areata led by Drs. Angela Rodgers, Renee Thomason, and Dani Hairston. Angela and Renee also debuted the innovative Adulting 101 with Alopecia Areata. These new sessions joined established support sessions for Parents of Children with Alopecia, It’s OK to Feel Sad, and separate sessions for men and women, led respectively by Angela Boes, Debora and Luis Pellicano, Michelle and Diego Molinari, Fred Wahl, Caitlin Riley, Bob Flint, Simon Rubenstein, Salman Hussein, Deirdre Nero, and Ann S. Hedges.
When the big weekend finally came, Lunapecia turned out to be a great success. All told, we had 235 attendees. Experiencing her first NAAF conference, VIP Julie Yoo emailed, “What an incredible Day 1! I was so inspired by many of the members sharing their stories,” and Monica Kim told us, “It looks so sharp and the flow is great. Love the short little breaks in between.”
The conference has always been something special, something bigger than all of us. And even though we all acutely felt the pain of not being with each other in person (like you, the NAAF staff gets completely recharged seeing our community), thanks to current technology and the dedication of many people we were still able to see and support each other and celebrate the achievements of our community, achievements that are resetting the goalposts in research, support, and advocacy. Yes, there was sadness, but the 2021 virtual conference was empowering, moving, and inspirational. It reaffirmed the fact that our alopecia areata community is united and powerful, and we are here for one another.
Perhaps the best part of this particular conference, something that is only true because we hosted the event virtually, is that you can still enjoy it! All of the recorded material is still available for anyone to enjoy. So if you missed the conference or just wish to rewatch a session or Q&A, you still can! Visit https://support.naaf.org/lunapecia and make a donation to NAAF. Upon receipt you will receive a confirmation email with a link to our Vimeo page with our 2021 Conference Showcase of videos.
See you next year in Washington, DC, from June 30 to July 3, 2022! And that’s a promise!