Annual Alopecia Areata Conference
The National Alopecia Areata Foundation's 35th Annual International Conference, “Virtual Gains," and first virtual conference, was on Thursday, June 18, 2020.
A Whole Conference in Your Living Room - Recapping NAAF’s 2020 Virtual Conference
To be honest, we weren’t sure whether we could do this. With just weeks to go, our leadership made the difficult but necessary decision to cancel the annual NAAF conference, which was scheduled to take place in mid-June in Washington, DC, and instead host a virtual conference. To put it mildly, 2020 was proving to be, well, a very different kind of year for NAAF. With the staff working from home since mid-March due to COVID-19 there were already challenges aplenty. Now we were tasked with distilling what is usually a four-day experience held in person at a sprawling hotel and complete with Tortoise & Hair™ walk and dessert dance, into eight hours held entirely over the home computer, tablet or phone!
Changing the conference title from Capitol Gains to Virtual Gains was the easy part. First, we had to figure out what kind of virtual platform would best replicate the NAAF conference experience. Luckily, hundreds of other organizations were pivoting to virtual events, and we were able to see what worked — and didn’t work — as we studied these affairs and chose a good fit for NAAF.
Next, we had to reach out to all of the scheduled speakers and presenters who volunteer their time to make the conference so informative and tell them of the direction we were taking. And every one of these special individuals understood and adapted their presentations to fit the virtual platform.
In the weeks leading up to the conference date of Thursday, June 18, we recorded the many presentations that did not require a live audience. Longtime Conference Emcee Maureen McGettigan and NAAF Communications Director Gary Sherwood also surreally recorded both the welcome and farewell in the same session. Award-winning bluegrass guitarist and singer-songwriter Molly Tuttle, who was originally scheduled to be our closing speaker in DC, recorded a duet with Cedrice Ce, an immensely talented vocalist featured on this past season of The Voice, the video of which was edited by Gary Sherwood’s brother Rich, a professional musician himself. All of the other prerecorded material was edited by NAAF’s in-house videographer Ben Staub, who did incredible work under a tight deadline. Of course, we were all on pins and needles waiting for a video from U.S. Representative Ayanna Pressley (D-MA), the Boston legislator who famously came out about her alopecia areata earlier this year — and the Congresswoman did not disappoint, delivering a powerful and inspiring call-to-action, which we made the centerpiece of the conference home page.
Had we been in DC, a massive Day on Capitol Hill would have seen conference attendees meeting with the offices of their senators and Congressional representatives. As this was no longer possible, the attendees who wanted to participate in our virtual Hill Day were urged to attend a preparatory live webinar and watch a video designed for young people made by our Legislative Mentors, and were then instructed to call their congressperson’s district office on the day of the conference and make our legislative asks using a prepared statement. Additionally, members of NAAF’s Advocacy Committee and parents of Legislative Mentors — all veteran advocates — scheduled 19 calls with the offices of various Senators, and these calls were open to all conference attendees residing in those states. As a result, Senator Kristin Gillibrand (D-NY) signed on as the first co-sponsor of our Senate companion bill, and we expect more co-sponsors in both the House and Senate. Additionally, the Massachusetts contingent led by Marianne Peterson and Chrissa Kaselis had an in-person meeting with Representative Joe Kennedy III (D-MA).
When the big day finally came the Virtual Conference turned out to be a greater success than we initially expected. All told, we had 306 attendees, including viewers from 34 states (with the largest contingents from California, Illinois, Massachusetts, New York, Pennsylvania and Texas) and from Japan, Norway, Canada, Australia, India, the UK, New Zealand and Lithuania.
In addition to the wealth of prerecorded material, the conference included several live Q&A sessions and panel presentations. Dr. Richard Long addressed questions about children’s emotional development in the context of alopecia areata. Angela Christiano, PhD, Maryanne Senna, MD, and Brittany Craiglow, MD, responded to questions related to their pre-recorded presentations. Biopharmaceutical industry representatives from Pfizer, Concert, Lilly, LEO, and Arena talked about their companies, what brought them to our virtual conference, how patient participation in therapeutic development is useful, and where it is most needed. And young adults shared their experiences growing up with alopecia areata and answered questions about situations other children may eventually face. Two live Support Forums led by NAAF Support Group Leaders also described how the NAAF Support Program is structured and how meetings are typically conducted, then initiated a meeting and took questions so attendees could sample the kind of support they might experience at a NAAF support group meeting.
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 2020 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.
After the Thursday virtual conference, there was one more important piece of the conference to bring into being — the Saturday night dance! Okay, again we couldn’t do the big four-hour dance where we’re all in one big ballroom boogying the night away. But our longtime DJ, Gary, got permission from the local radio station where he has a regular show, and he was able to present a two-hour virtual dance comprised of ’70s Disco and ’80s New Wave music (the two genres for which we get the most requests), and conference attendees could tune in and share it with their friends across the country.