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2015 conference

Registration for the 2015 Conference in Garden Grove, CA, June 25-28, 2015 will be available January 2015.

Defining Our Destiny in San Antonio 2014

The 29th Annual National Alopecia Foundation Conference Launches a New Era

Sammy from conferenceLet’s begin near the end.  Closing session.  Conference MC, Maureen McGettigan, introduces our inspirational speaker, and from the moment he bounds onstage behind her, you can feel the energy shift.  First thing you notice is the hoody, dark blue with what first appears to be the California state seal emblazoned on the front.  He’s proud of his OC roots.  But closer inspection reveals it to be a buffalo underneath the words Catalina Republic.  White ballcap.  Dark blue jeans, worn loose and baggy, pile onto four-alarm red sneakers.  The audience cheers to varying degrees of enthusiasm, primarily based on age. The moms and dads politely applaud…but the kids – particularly the never-shy young adult contingent in the ballroom’s northwest corner - go ballistic.  He’s not yet old enough to vote, hasn’t uttered a single word, and he already owns the room.  His face erupts into a bright, genuine smile.  He utters a few words of greeting, and then comes THE BEAT.  And Sammy Picou, aka “Sammy C”, is busting rhymes with all the authority and swagger of a young Eminem (only more PG rated), and if the previous three days haven’t made the message clear, this certainly does:  Welcome to the New Era of NAAF.

San Antonio in the twilight of June is hot, humid and, in our experience, prone to some short but intense rainstorms. It’s also studded with history, Spanish-style architecture, and a justifiably popular estuary-themed cornucopia called the River Walk.  Like so many of its denizens, the South Texas city is beautiful and dramatic, but also profoundly friendly; the perfect venue for the 29th Annual National Alopecia Areata Foundation International Conference.  

The Hyatt Regency San Antonio River Walk was the Conference locus.  Modern and large enough to host an affair our size, yet not sprawling or impersonal, the hotel’s most singular physical feature was the network of glass elevators racing the elevation of its atrium lobby.  These transparent dynamos gained added luster when conveying members of our special community, especially the children, zipping up and down the hotel in gleaming jewel cases for all to see. Look at us, indeed!

But of course a hotel, no matter how nice, does not make a Conference.  It’s the attendees, those 622 members of the NAAF family who travelled from all points of the country, as well as six foreign nations. Of that number, over a third – 225 to be exact – were VIPs, those enjoying their first NAAF Conference.

Conference 2014 2 little girlsWhat awaited these eager congregants were four days none would forget. There were support sessions for all ages, as well as those geared for such specific demographics as young adults, parents, and single males.  The Conference Camp offered kids ages 5-17 with alopecia areata, as well as their supportive siblings, all sorts of fun and excitement, from a trip to Ripley’s Believe It or Not! Odditoreum to a swim in the hotel’s rooftop pool.  Practical workshops educated and inspired their attendees.  The cosmetic demonstration with live models displayed make-up, hairpieces and accessories along with four demonstration stations, while the advocacy and awareness panel featured event coordinators sharing their expertise along with an overview of our legislative asks.  A comprehensive overview of alopecia areata and its various treatments was provided by respected dermatologist Dr. Len Sperling, who concluded, “The future is filled with hope.  Someday we’re going to know precisely what causes alopecia areata.  And someday we’re going to have a safe and effective treatment.”  This was followed by Dr. Maria Hordinsky’s presentation demonstrating how NAAF’s Treatment Development Program strategically directs and drives research, makes targeted research investments, raises the profile of alopecia areata research, draws researchers, facilitates collaboration, and improves the health care ecosystem.  Dr. Angela Christiano wowed attendees with a presentation on the latest investigative work into alopecia areata.  Those further interested in  alopecia areata research could literally “Ask the Experts” at a panel which included some of the most renowned and respected names in the field, including Drs. Vera Price, Maria Hordinsky, Richard Long and David Norris.  And Saturday’s guest speaker Deirdre Nero, an immigration lawyer from Miami who has become one of our most potent voices for advocacy, delivered a presentation that was equal parts funny, sad, candid and very wise.

No Conference would be complete without a Tortoise & Hair™ walk, and for such a storied city as San Antonio, there was only one location that would serve as a starting point:  that legendary edifice and symbol of Texas pride, the Alamo.  The rain, which had pelted the city every previous morning, finally held off as hundreds of Conference attendees sporting distinctive purple t-shirts gathered in the tiled expanse of Alamo Square.  And here, a moment of spontaneous magic occurred.  NAAF’s new President & CEO, Dory Kranz, recovering from knee surgery, came to join the walkers on a mobility scooter (blinged out by the NAAF staff with handle bar tassels, flags and a bell).  Two attendees asked to have their photo taken with Dory…then two more begged to crowd in…then another and another…and soon practically everyone in the square surrounded our new officer for a group picture that proves NAAF may be changing but our unity, our family, our bond remains as strong as ever.

The New Era of NAAF continued later that morning as Dory gave her debut presentation to a Conference General Session as President & CEO.  With one hand reaching back for what’s best in NAAF’s tradition of awareness, advocacy, and research, the other outstretched towards our shared aspirations for the future, new insights, new ideas, and new approaches, Dory potently stirred the attendees and while giving them glimpses of what the future may hold not only for alopecia areata but the entire community affected by autoimmune disease, skin disease, hairloss, and the emotional challenges that accompany visible differences.

conference 2014 three facesMore of the New:  the inaugural “It’s Okay to Feel Sad” support session, led by longtime NAAF support volunteer Matt Kelley, who has a master’s degree in counseling psychology, was an unqualified emotional and educational success. The Legislative Liaison Reception, meanwhile, expressed appreciation for those special volunteers advocating to their lawmakers on behalf of the alopecia areata community, while attracting new members as well.

Saturday night thumped to the rhythms of our Denim & Diamonds dance, where rug cutters and high steppers wore their finest in prairie paraphernalia while a mysterious DJ in black, known to some as Jazzy G, spun everything from early Motown to ‘70s disco to the latest Miley Cyrus.

Then before we knew where the time really went, it was the Sunday morning closing session.  Novelty hats were presented to the best dancers from the night before.  More substantial prizes, including a Samsung Chromebook and Asus Nexus7 Tablet, were next awarded to those who raised the most donations for the Tortoise & Hair™ walk, which brought in an impressive total of $35,200.  NAAF Board Chair Maureen McGettigan was honored for yet another stellar turn as MC (her tenth!).  

And now we’re back to “Sammy C.”  His opening number has gone down like a localized hurricane.  Out comes a tablet from which he occasional steals glances, and he’s telling the assembled NAAF tribe, “Our destiny is in our difference.”  His address is passionate, his delivery amazingly assured for such a young person.  He relates his elation at being selected for NBC’s singing competition show, The Voice, followed by the disappointment of not progressing further on the program.  But the experience taught him to channel that disappointment into determination.  Obstacles can be overcome, processed into fuel for our ambition.

That’s what NAAF is doing.  We may still face some formidable obstacles, but with our traditional strengths mated to new ideas, new programs, and new outlooks, we can’t help but overcome anything put before us.  And so San Antonio could be seen as the beginning of a new epoch for NAAF and the community we serve.  Now bring on Anaheim in 2015!      






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