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Annual Alopecia Areata Conference

Fearlessness – and FUN – at the 2019 NAAF Conference!

Fun fact: When you see two bald eagles fly straight into one another, full-force, grab talons and spiral downward together before again taking flight, don’t be alarmed. You’ve just witnessed their mating process, as did NAAF CEO Dory Kranz early on Day 2 of the NAAF conference in Seattle, where these bald eagles were dubbed “alopecia eagles” by conference attendees. Now really, what could be a better omen?

In addition to eagles, this year’s conference attendees saw stars. Widely hailed as one of the best quarterbacks in the NFL, Joshua Dobbs of the Pittsburgh Steelers was our keynote speaker, preceded by Sports Illustrated Kids’ 2018 Sportskid of the Year, champion swimmer Leah Hayes. And for the third year in a row, two-time International Bluegrass Music Association’s Guitar Player of the Year, Molly Tuttle, played live before the Opening and General Sessions, as well as performing at the kids camp. You can hear a sample of Molly’s music as it provides the soundtrack for our “NAAF Conference Day 1” video made by our extremely talented videographer, Ben Staub.

The conference has always been something special, something bigger than all of us. Two years ago, in Miami, we celebrated the spirit of the new, the boldness of the young. Last year in Scottsdale, fresh off of our recent meeting with the FDA and the development of the Youth Mentor program, it was community members celebrating the value of community engagement. And this year, as we got Fearless in Seattle, we celebrated achievements by all members of our community, achievements that are resetting the goalposts in research, support, and advocacy. It was a beautiful thing to behold, every bit as breathtaking as the glorious setting.

Then there was the hotel itself. The Hyatt Regency Lake Washington was a miraculous combination of modernism, space, and coziness all in an easily navigable structure that felt like home from the moment you entered that wide open lobby and gazed out at the calm but majestic view. This was the setting for 616 attendees, including 241 VIPs (i.e. those attending for the first time), who ranged in age from 1 to 83 and hailed from 38 states and 5 foreign countries—Brazil, Canada, France, Mexico, and New Zealand. A total of 52 adults and 31 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 enjoy the time together.

At its heart, the NAAF conference is about support, and this year we were proud to unveil several exciting new support sessions, including “Revealing or Concealing—How to Tell Others” facilitated by Ann Hedges and Connie Jo Russo; “Help Yourself In Daily Life” facilitated by Deeann Graham, Megan Simon and Julie Stiles; “Mindfulness, Meditation & Confidence” facilitated by Heather Dalton; “Patchy Alopecia Areata” facilitated by Kiki Gorbatenko-Roth; “Alopecia & the LGBTQ+ Experience” facilitated by Tyrone Folliard-Olson; and “Exploring Your Identity with Alopecia Areata” facilitated by Enzina Carida, Caitlin Riley-Klepac, Paul Marino, Megan Simon, and Fred Wahl. These were in addition to such proven favorites as “It’s OK to Feel Sad” facilitated by Fred Wahl, Jennifer DeFreece, Paul Marino, and Enzina Carida; “Enriching the Elementary School Experience” facilitated by Missy and Mike Puccini, Michelle and Diego Mollinari, Vanessa Sorenson, Lindsey and Jason Manigal, Susan Rubenstein, and Traci Leonard; and “Living the Active Life with Alopecia Areata,” facilitated by Fred Wahl, Connie Jo Russo, and Anita Geleynse.   

NAAF continues its efforts to work closely with 16- to 30-year-olds so they may better share their experience and wisdom with younger children, parents and peers. In addition to the Youth Mentor workshop (see below), this year’s conference offered the support sessions “Young Adults and Alopecia Areata,” and “Women & Young Adult Women with Alopecia Areata,” as well as the panel “Young Adult Perspectives.” Our most sincere gratitude goes to Brittany Angerhauser, Simon Rubenstein, Danielle Candray, Anna Chaletzky, Paige Moore, Cara and Jenna Puccini, Nell Sanders, Zachary Sents, and Christina Wigant for providing such valuable information in their respective panels and sessions.

Speaking of young people, Nell Sanders, co-developer and administrator of the Youth Mentor Program, along with NAAF summer intern Ernie Kaye, facilitated the well-attended workshop, “Become an Alopecia Areata Youth Mentor.” Nell gave a detailed account of how the program works, and how the young folk attending the workshop could better the lives of kids who might well benefit from their experience.

Those wishing to learn more about possible treatments were brought up to date by many presentations. There was an “Ask the Experts” panel, which included Drs. Leslie Castelo-Soccio, Maria Hordinsky, David Norris, Brett King, and NAAF’s Chief Scientific Officer Natasha Mesinkovska who also gave her own highly entertaining and informative presentation on the state of alopecia areata research. “Genetics, Immunology and Targeted Therapies” by Dr. Angela Christiano provided an update on genetic and immunological studies in alopecia areata, while “Current Treatments for Adults” by Dr. Hordinsky and “Pediatric Alopecia: Treatment Options” by Dr. Castelo-Soccio provided important and timely information on their respective topics. NAAF again welcomed Industry Partners from LEO, Lilly and Pfizer to participate on a panel to discuss the importance of patient engagement and incorporating the patient voice into treatment development.

NAAF’s patient advocacy progress has been going full-tempo, thanks in no small part to the work of our Legislative Liaisons. Even at the conference, Wendy Yu and her 14-year-old daughter Allison Ma made it a point to schedule a meeting with Marvin Eng, District Representative for Congressman Adam Smith (D-WA) to ask his support for our new bill, H.R. 3332, which would provide coverage for cranial prosthetics (wigs) as durable medical equipment under the Medicare program. We announced this new bill, as well as the exciting news that Senator Richard Blumenthal (D-CT) has agreed to be the lead on senate companion legislation, during our General Session. Our Awareness & Advocacy workshop is always enlightening for both the VIP and the veteran, and this year we welcomed District Representative Eng as our special guest, while new presenter McKenna Reitz proved herself the equal of returning vets Deirdre Nero, Tyrone Folliard-Olson, Josh Lang, Rob and Harrison Goldberg, and Debora and Laura Pellicano.

The Tortoise & Hair™ fundraising walk brought in a grand total of $39,208 thanks entirely to the heroic efforts of community members who were issued dark green t-shirts (as were, after all, in the evergreen state) for the scenic walk along the lake. Special congratulations go to our Top Five fundraisers:

1) Peyton Hemann
2) Maria Mahnken & Maureen McGettigan
3) McKenna Reitz
4) The Pastorius Family
5) Ryan McManigal

This year’s inspirational speakers more than lived up to expectations. During our Opening Session life coach Deeann Graham spoke on her approach to living with alopecia areata, while at the following day’s General Session the dynamic duo Legislative Liaisons Kate Ekman and Anamarie Tan movingly told us how working to change laws affecting the alopecia areata community changed their very lives. Then came the grand finale: our closing session speakers were champion swimmer Leah Hayes and Pittsburgh Steelers quarterback Joshua Dobbs. Both athletes spoke eloquently about their alopecia areata experiences—the difficulties of being diagnosed with the disease while still a kid, and determining that it was not going to keep them from attaining their dreams. They were nothing short of show stopping—and, by the way, both of them really knew how to dress for the occasion! Earlier that morning, Joshua also paid a visit to the kids camp to answer questions and provide the inspiration only a pro athlete with the same disease as the children can give.

Of course, no conference would be complete without our Saturday night dance, and the theme this year was “Music That Made the Movies.” (Some might want us to apologize that Patrick Swayze’s “She’s Like the Wind” is still stuck in our heads, but we’re not sorry!) As a bonus to those who stayed until the end of the dance—we again went past midnight—Joshua Dobbs showed up to greet his fans, pose for pictures, and play tic tac toe ‘til the wee hours.

See you next June in another Washington… Washington, DC!