Annual Alopecia Areata Conference
Don't miss the next NAAF Conference, Thursday, June 22 – Sunday, June 25, 2017 in Miami, Florida.
MY LIFE – MY POWER - MIAMI
My Life - My Power - Miami is the theme of the 32nd Annual NAAF International Conference scheduled for Thursday, June 22 to Sunday, June 25, 2017, in Miami, FL. Among those tentatively scheduled to appear are eminent alopecia areata researcher Angela Christiano, actor Anthony Carrigan (Parenthood, The Flash, Gotham), and UK rugby star and Olympian Heather Fisher. A researchers and industry panel will provide you the extraordinary opportunity to directly address your questions to the very people most intimately involved in the search for treatment and a cure. This unforgettable experience will connect you with a network of others who share the same challenges, professional caregivers offering medical information and advice to better understand and manage alopecia areata, and expert researchers with the latest findings of NAAF’s Treatment Development Program. Plus you’ll be in one of the world’s most exciting and diverse cities – an experience not to be missed! Registration begins in early 2017.
With this setting as backdrop, the four-day NAAF conference may transform not only your life but those around you! This conference is for people of all ages who have alopecia areata or care about someone who does.
• Learn you are not alone.
• Share personal connections with people who care.
• Become empowered to go home and make a difference.
• Hear about the latest research progress made by the Treatment Development Program.
• Contribute to ongoing research by joining the Alopecia Areata Registry, Biobank & Clinical Trials Network.
• Learn about useful products for people with alopecia areata.
• Exchange ideas, support, and advice.
• Surround yourself with others who understand.
• Enjoy inspiring sights, stories, and experiences.
• Develop personal memories that will last a lifetime.
Our Conference Hotel—Hyatt Regency Miami
With its striking white towers overlooking the Miami River, Hyatt Regency Miami is a landmark hotel offering top travel services and amenities and the most convenient location in the area. You’ll enjoy easy access to popular attractions, like Brickell City Center, Wynwood Art District, Coral Gables, Port of Miami, and the Latin flavor of Little Havana.
Tortoise & Hair™ Conference Walk
This year’s Tortoise & Hair™ Conference Walk follows Miami’s picturesque Riverwalk as you and your family raise awareness for alopecia areata, along with funds to benefit NAAF as we continue to provide awareness, support, and research for the alopecia areata community.
There’s no entry fee, but each walker or family must raise a minimum total donations of $25 per individual or $50 per family. There will be amazing prizes for the highest earners. You can start today with your own fundraising page here.
Don’t think you’ll be going to the Conference, but you’d still like to participate? No problem! You can set up a donation page allowing you to hold your own virtual Tortoise & Hair™ right in your own hometown. Contact us at 415-472-3780, and we’ll get you set up.
Spend a Night in the Caribbean at the 2017 Conference Dance!
Reggae, Afro-Cuban and salsa mixed with your dance favorites will make for one spicy mix at the Night in the Caribbean Dance Party when you attend the upcoming National Alopecia Areata Foundation International Conference, Thursday, June 22 to Sunday, June 25, 2017, in Miami, FL. The Saturday night dessert dance is a conference tradition and you’ll samba ‘til midnight while enjoying ice cream or a drink at the no-host bar. And the adults-only private lounge is a perfect place to chill and unwind. But don’t rest too long ‘cause once again we’re going to be looking for the best dancers to honor at next day’s closing ceremony.
NAAF Conference Exhibitors invite you to visit their exhibitor displays showcasing the many products and supplies available for people with alopecia areata. All exhibitors are available for private appointments. There will be no exhibitor displays on Sunday, but there will be a special “Meet the Exhibitors” session from 2 to 4 pm on Thursday, June 22. This is your opportunity to see, touch, feel, and purchase hard-to-find products that are helpful for dealing with alopecia areata on a daily basis.
Patient Centered Outcomes Research (PCOR)Training
With the current accelerated pace of research in both our disease and in the importance of patient-centered outcomes to inform the development of treatments relevant to patients, we find ourselves at a critical juncture where we need, but lack, validated endpoints including patient reported outcomes. Our community is being asked to participate in the research process by providing experiential testimony, participating in the development of a Patient Reported Outcomes Instrument and participating in clinical trials, but is not yet prepared to meaningfully engage in and inform the design of patient-centered clinical research to its fullest potential.
Therefore, during this 2-hour training session, the NAAF Community will learn about the importance of their voice in research and become prepared to meaningfully engage and inform the design of patient-centered clinical research, gain understanding of how we have impact in the legislative process.
General Program Planning
The NAAF Conference is for people of all ages living with alopecia areata or care about someone who is. There will be many sessions open to all such as the General Sessions, Research Updates, Ask the Experts Industry and Researcher Panel, and the Health and Research Ambassador Training. The following “tracks” call out audience specific sessions and activities to assist you in planning your 4-day Conference experience:
Individuals Program Track: Adults living with alopecia areata can attend a series of workshops and discussion sessions that address day to day living with empowering and supportive group feedback on a variety of issues such as “alopecia areata in the work place”, “women & alopecia areata”, “men & alopecia areata”, relationships and intimacy and alopecia areata.
Parents Track: Parents of children with alopecia areata join together with others to share understanding, knowledge and feedback. Sessions such as “Parents of girls with alopecia areata”, “Parents of boys with alopecia areata”, and the “Young Adult Panel” give parents the opportunity to hear from other parents and young adults about their experiences and perspective.
Young Adults Program Leadership Track: Young adults, ages 17-30 are invited to attend a series of sessions tailored specifically to their age group. Sessions include the Young Adult Mentorship Program, Young Adults Panel Discussion, Using your social media networks to raise awareness and funds, and a visit to the Kids Camp to share advice and insights with the children.
Children’s Alopecia Areata Conference Camp – The Premier Event for Kids with Alopecia Areata
Kids Conference Camp (ages 5–10)
Tweens Conference Camp (ages 11–13)
Teens Conference Camp (ages 14–17)
The Children’s Conference Camp supports children with alopecia areata by nurturing their self-esteem through carefully planned activities by the Corporate Kids Events (CKE) team. Support arises spontaneously as the kids interact with others who have alopecia areata, as well as their siblings and friends in a fun, creative, and active environment. Kids, Tweens and Teens are sure to adapt quickly and make new friends and wonderful memories. Creative arts and activities are interspersed throughout the weekend.
Registration will be available in February 2017. For information on how to register, please call 415-472-3780, email firstname.lastname@example.org.
2016 NAAF Conference - Steps to Empowerment Lead to Triumph in DC!
What an Emboldened Community Looks Like
What did “Steps to Empowerment,” the NAAF International Conference, held from July 14 to 17 in Washington DC, look like? The conference palate was made up of so many hues, it’s difficult to give a single answer. Perhaps it’s best to look at what each facet of the conference had to offer.
What did Community look like? It looked like 540 men, women and children — those with alopecia areata along with their loved ones — ages 1 through 78, from 38 states and 9 countries, coming together at the Hyatt Regency Capitol Hill for four days. A total of 235 people were attending their very first conference and earning the red badge of a “VIP.” And 43 adults and 17 children who might have been prevented from attending due to financial straits joined with us thanks to our special scholarship program. It also looked like 160 young folks having the time of their lives in the Kids Camp and Tweens/Teens Camp.
What did Empowerment look like? It looked like 400 conference attendees in matching dark blue t-shirts marching up to Capitol Hill on a warm overcast morning and meeting with the staff members of 55 senators and 128 congressional representatives, telling their stories and asking for support of legislation that will better the lives of everyone in our alopecia areata community.
What did Education look like? It looked like attendees participating in a general session entitled “Spotlighting Community Engagement in Research” in which they learned more about the following topics: “Participating in Clinical Research,” “Where Are the Psychologists?,” “The Voice of the Patient: How the FDA Review Process Works,” and “Patient-Centered Research: How to Get Involved.” It looked like an “Ask the Experts” panel where attendees had the opportunity to address their research queries first-hand to such investigative luminaries as Drs. Angela Christiano, Madeleine Duvic, Maria Hordinsky, Brett King, Justin Ko, Lucy Liu, Richard Long, Natasha Mesinkovska, David Norris and Jerry Shapiro.
What did Support look like? It looked like a multitude of well-attended discussion sessions tailored for those with alopecia areata as well as their loved ones. These sessions each had a specific focus as described by their title: “Parents of Children with Alopecia Areata,” “Women & Alopecia Areata,” “It’s Difficult for Men Too,” “Alopecia Areata in the Workplace,” “Wigged Out and Loving It” and “Relationships & Intimacy with Alopecia Areata,” to name but a few. And there were a variety of ever-popular workshops, such as “Wigs 101” and “Awareness & Advocacy,” joined by exciting new offerings like “Living the Active Life with Alopecia Areata.”
What did inter-age Communication look like? It looked like young adults hosting a new workshop entitled “Build a Successful Mentoring Program,” designed and led by older kids to help teens and children. Those same young adults built a bridge of understanding to parents by hosting a panel entitled “Young Adult Perspectives.” And they also visited the Kids Camp to share their advice and insights with the younger folks.
What did Inspiration look like? It looked like Pittsburgh Steelers linebacker Ryan Shazier describing his own alopecia areata experience, then taking questions from the audience about how he didn’t let the challenges of his condition deny him his dream of playing in the NFL. And it looked like NBA great Charlie Villanueva once again appearing at the Kids Camp to remind our kids that they can do and be anything they have their hearts set on.
What did Posterity look like? It looked like community members both old and new sitting down before the cameras to discuss their role in the patient advocacy process as part of NAAF’s oral history project. It looked like veteran Legislative Liaisons Bob Flint and Abby Ter Haar sharing their experiences alongside such new liaisons as Lauren Onley and Allyson Saca, all expressing the same enthusiasm and willingness to engage our lawmakers. Allyson wanted us to know, “Everyone was so very welcoming to me, and it made my first conference not a difficult as I feared.”
What did FUN look like? It looked like a John Hughes movie as attendees donned legwarmers, fingerless gloves, heavy metal paraphernalia, and other period costumes to dance to Madonna, Bananarama, Pet Shop Boys, and no less than three Jacksons (Michael, Janet…and Joe!) at the Totally Rad ’80s Dance Party. It looked like alopecia areata families going as a group to attend a Washington Nationals night game or a U.S. Army Band concert at the Capitol. And it looked like the Kids Camp visiting the National Air and Space Museum and beating the summer heat in the hotel pool.
The NAAF conference in DC looked like all of this, only more so because often many of these activities were happening simultaneously and it was truly impossible to see the whole thing at once. But whatever you saw, whatever you experienced, whatever you felt, will likely stay with you for a very long time. When asked how she enjoyed the conference, 5-year-old Erynn Onley answered, “Sappy.” Asked what she meant, Erynn explained she felt sad about having alopecia areata, but happy about being at the conference with her family and meeting others with the same condition. And that’s what the conference is all about.