Annual Alopecia Areata Conference
2017 NAAF Conference Highlights
You felt it as soon as you stepped outside. As you descended the back stairs of the Hyatt Regency, the famous Florida humidity clung and made your clothes feel heavy. Yet as you made your way to the river front, a cool breeze blowing westward from Biscayne Bay and up the Miami River made you feel welcome and renewed, energized with a new spirit and purpose, like winds of change. The 32nd Annual National Alopecia Areata Foundation International Conference – My Life, My Power, Miami – highlighted those winds of change in our community, while still featuring what was best from our past.
The conference welcomed 564 attendees ages 1 to 85, including 250 VIP’s (i.e. those attending for the first time) from 38 states and 10 foreign countries; Canada, Ireland, Italy, New Zealand, Australia, the United Kingdom, Italy, Colombia, Brazil and Denmark. All had a chance to experience both what was new and what was, well, not so new but still valuable as we came together for four unforgettable days; Thursday, June 22 to Sunday, June 25.
Change was most exemplified in the young adults, many veterans of the Children’s Conference Camps in which they forged bonds of friendship and fellowship as they came of age while learning about both themselves and others with alopecia areata. In our new workshop, “The Power of Us: Become a Social Ambassador,” Brittany Angerhauser and Ebony Dicks taught their fellow young adults (and anyone else!) to harness their passion and spread NAAF’s message of empowerment to others through social media channels. Young adult volunteers Rafi Wasserman and Nell Sanders (more on her below) led the launch of the NAAF’s Mentorship Program, hosting a session that introduced this unique program in which these mentors may help kids and teens live with alopecia areata as well as parents cope with their child’s condition.
Change was evident in how we further engage the community with the Patient-Centered Outcomes Research Training. NAAF President & CEO Dory Kranz, along with Drs. Salman Hussain, Angela Rodgers, and Renee Thomason shared with attendees the importance of the patient perspective in research, how to meaningfully engage throughout the research process, the new frontier of Comparative Effectiveness Research and precision medicine, and the potential impact of the patient perspective in the FDA’s review and approval process for new products.
Change blew in with the innovative new workshop, “Am I Okay? Yes I Am! Or I’ll Fake It ‘til I Make It.” Facilitators Buddy Friedman, Reuben Greenwald, Matt Kelley, Joanne Pappas Nottage, Dan Scali and Claire Foster Thuesen discussed self-perception, and the impact alopecia areata could have on our outlook on life.
We know of no other workshops like these and believe the information they provided may prove invaluable to those who attended.
Change was everywhere as we introduced new ways to entertain and inspire attendees. Nashville singer-songwriter and guitarist Molly Tuttle, who herself has alopecia areata, performed live before the General and Closing Sessions, as well as the Advocacy & Awareness Workshop, Tortoise and Hair™ Conference Walk, and Children’s Camp Talent Show. You can hear a sample of her music as it provides the soundtrack for our conference highlight video. Nell Sanders introduced slam poetry to the conference during a dramatic performance about growing up with alopecia areata which earned her a standing ovation from the General Session. And there was change at the Night In the Caribbean Dance Party as, for the first time ever, we offered salsa dance lessons of which 50 attendees took advantage.
Of course, all of this change doesn’t mean we did away with all the elements our community knows and loves. We still provided a wealth of education with our General Session topic “The Push for Change – From Insights to Action” in which Dory discussed our increased focus on patient engagement (including our upcoming Patient-Focused Drug Development Public Meeting scheduled for September 11) as well as workshops “Where Are the Psychologists?” and “Child Development and Resiliency.” For the many interested in the latest investigations into treatments, the Opening Session: New Frontiers in Research offered plenty of information courtesy of Dr. Angela Christiano and NAAF Chief Scientific Officer, Dr. Natasha Mesinkovska, followed by our first-ever industry panel moderated by Dr. Angela Rodgers. The always-popular “Ask the Experts” panel gave attendees the opportunity to address their research queries first-hand to such clinical luminaries as Drs. Maria Hordinsky, Brett King, Richard Long, Natasha Mesinkovska, and Gabriela Nero.
We also still offered well-attended discussion sessions tailored for those with alopecia areata as well as loved ones. These sessions each had a specific focus as described by their title – “Parents of Children with Alopecia Areata,” “Women & Alopecia Areata,” “Men & Alopecia Areata,” “Dating and Alopecia Areata,” “Living the Active Life with Alopecia Areata,” were just several. And there were a variety of workshops such as the ever-popular “Wigs 101” and “Awareness & Advocacy,” the latter which enjoyed its largest attendance yet.
Once again, conference attendees were able to attend a night of baseball as the Miami Marlins hosted the World Champion Chicago Cubs, and several of them had the thrill of seeing themselves on the Jumbotron. Saturday morning witnessed 400 conference attendees in bright aqua-colored t-shirts participating in the traditional Tortoise & Hair™ Conference Walk, passing the magnificent yachts, expensive cars and luxury apartments along the Miami River while raising $30,034 for NAAF’s continuing efforts in research, awareness and support.
And we still honored longtime friends and heroes like NBA great Charlie Villanueva, with a look back on his career and 11 seasons of his groundbreaking awareness program, Charlie’s Angels. The retrospective and Q&A at the Closing Session was a surprise for both Charlie and the attendees. Joining Charlie onstage was Pittsburgh Steelers linebacker Ryan Shazier who looks forward to unveiling his own awareness program soon. Meanwhile, actor Anthony Carrigan, who had to cancel his appearance at the last minute due to his busy shooting schedule, provided us a short film expressing his wishes for the community to stay strong, while Representative Ileana Ros-Lehtinen (R-FL) sent us a video of her magnificent speech on the House floor urging fellow members to recognize and help those with alopecia areata.
All of these changes represented in their own way the adaptability of NAAF and the alopecia areata community as we once again affirmed our identity and values. No one who has attended multiple conferences will ever tell you they’re all the same. Each brings something different, both in location and general atmosphere. But we could tell, even as it was swirling around us, that there was something special about this conference as the spirit of the new, the boldness of the young, infused so much of what was learned and shared. And the conference traditions that we continue to uphold reaffirm what’s best and most important to this community.
See you next year in Scottsdale, Arizona Thursday, June 28 through Sunday, July 1.
Conference Highlights Video