Detailed Program
 

THURSDAY, JUNE 28th 

Registration, Information Display and Tortoise & Hair™ Conference Walk Check-In | 1:00 pm6:00 pm
Attendees begin their conference experience at registration where they will receive their portfolios with detailed information and name badges that are required to attend all sessions. Tortoise & Hair™ Conference Walk participants may also pick up their t-shirts here after submitting their fundraising donations or paying an additional fee ($25 per person/$50 per family).
 
Exhibitor Displays | 1:00 pm—8:30 pm
NAAF Conference Exhibitors invite you to visit a variety of displays showcasing the many products and supplies available for people with alopecia areata.
 
Children’s Alopecia Areata Conference Camp (Ages 5-17) | 1:00 pm—7:45 pm
Our Children’s Conference Camp supports children, tweens and teens with alopecia areata by nurturing their self-esteem in a fun, creative and active environment. Dinner is included today.
 
Meet the Exhibitors | 2:00 pm—4:00 pm | General Track
This is a special time to meet with the exhibitors to discuss and ask questions about their products. Snacks and refreshments will be served.
 
Community Empowerment Workshops 1-4 | 4:00 pm—5:30 pm

1   It’s OK to Feel Sad | General Track
Are you struggling with alopecia areata? You are not alone. Whether you yourself, your child, or a loved one have been diagnosed with this disease, this support group is for people who are having a hard time coping with the grief and loss associated with alopecia areata. Whether it’s been months or years, it’s okay to feel sad. Just as alopecia areata (and the associated amount and type of hair loss) differs for everyone, so does the grief and loss process surrounding the condition. Workshop leader Matt Kelley is a longtime NAAF volunteer and telephone support contact, a marriage & family therapist, and a licensed professional cinical counselor Intern.
 
2   Where Are the Psychologists? | Individuals Track
Kristina Gorbatenko-Roth, a licensed psychologist and patient with alopecia universalis, will answer your questions on how to live well with alopecia areata.  All psychosocial-related questions and topics are welcome!  Examples of hot topics from past years include: how to talk to loved ones and your doctor about the emotional burdens you may be facing, different strategies for coping, and how acceptance can lead to overall better health outcomes.

3   Become an Alopecia Areata Youth Mentor | Young Adults Track
Looking to make a difference? NAAF’s Youth Mentor Program connects children living with alopecia areata and their parents to young adult mentors to form lasting bonds while providing support and guidance. The best role model is someone who is one step ahead. Sharing your personal experience can help other kids and teens live with alopecia areata as well as parents cope with their child’s condition. NAAF’s Community Engagement Manager, Eugene Levinson facilitates this workshop.
 
4   Child Development and Resiliency | Parents Track
This workshop will help parents understand the phases of a child’s overall growth, how a child with alopecia areata develops his or her concept of self, and how resiliency can be nurtured and supported to empower a child’s efforts to cope. Workshop leader, Dr. Richard Long, has worked with NAAF since its inception. He is a mental health consultant and holds a doctorate in counseling from George Washington University.
 
Veteran & VIP (First-Timer) Welcome Reception | 6:00 pm – 7:30 pm | General Track
Reconnect with old friends and greet new ones during the Veteran and VIP Welcome Reception. Don’t be shy! Whether it’s your first conference or your fifteenth, we are all here for the same reason. We encourage all conference Veterans to welcome the VIP attendees (the First-Timers), and we urge all VIPs to introduce themselves! Hearty appetizers will be served, and a cash bar will be available.
 
Young Adult Gondola Boat Ride | 7:00 pm—10:30 pm | Young Adults Track
Come join your peers, make new friends and get whisked away to Venice aboard a handcrafted Italian Gondola cruise through the waterways along the resort's seven acre lake.  For more information on the Gondola Boat Ride click HERE.  You can register and pay for this activity at the hotel Concierge or by calling 1 (480) 444-1234, extension 5603. 
 

FRIDAY,  JUNE 29th 

Registration and Tortoise & Hair™ Conference Walk Check-In | 7:30 am—5:30 pm
 
Children’s Alopecia Areata Conference Camp (Ages 5-17) | 7:45 am—5:45 pm
Lunch is included today.
 
Exhibitor Displays | 8:00 am—7:00 pm
 
Orientation Session | 8:00 am—9:00 am | General Track
This session is especially valuable to first-time conference attendees. Veteran emcee Maureen McGettigan, a longtime friend, volunteer and past Chair of the NAAF Board of Directors, will welcome everyone to get acquainted and provide an overview of what to expect throughout the weekend.
 
This session will close with a panel of veteran conference attendees who will share their experiences at past conferences, discuss anxieties related to attending the conference, and provide tips on how to get the most out of your conference experience.
 
Opening Session| 9:00 am—11:00 am | General Track
Hear about how to meaningfully participate in research, engage with the FDA and learn more about emerging initiatives that matter most to you.
 
NAAF Support Group Leader, Elizabeth (Liz) DeCarlo, will describe her experience with patient engagement at the FDA. Liz was diagnosed with alopecia areata when she was 13 years old. She is one of six children, but is the only one in her family with the disease. Last year, Liz was given the opportunity to comment on the ways alopecia areata impacts her everyday life during the US Food and Drug Administration (FDA) patient focused drug development (PFDD) meeting. She will share what it was like to participate in this meeting, the issues she wants others to understand about alopecia areata, and what matters to her as a patient.
 
Drs. Maria Hordinsky, Leslie Castelo-Soccio and Angela Christiano, leaders of the upcoming Alopecia Areata Doc Talks, will take the stage to share an overview of the information that will be covered in their substantive breakout sessions.
 
A panel of biopharmaceutical industry experts will join us to discuss current challenges and opportunities in drug development for alopecia areata; from preclinical research and discovery all the way through clinical trials and approval pipelines. Learn about the entire process, ask questions, provide feedback and become empowered with information to support your involvement in research. This panel is designed as an open exchange between industry experts and audience members to learn how we can work together to move products for alopecia areata from discovery to market.
 
Alopecia Areata Doc Talks 1-3 | 11:15 am—12:15 pm
Select the topic that interests you most from our list of Alopecia Areata Doc Talks led by the corresponding Opening Session speaker. Doc Talks will provide in-depth research and clinical presentations followed by substantive question-and-answer and discussion time.

1   Genetics, Immunology and Targeted Therapies in Alopecia Areata | General Track
Dr. Angela Christiano will provide an update on genetic and immunological studies in alopecia areata. By working to elucidate the genes responsible for alopecia areata, Dr. Christiano’s research has helped clarify the immunologic mechanisms behind the disease. Dr. Christiano is the Richard and Mildred Rhodebeck Professor of Dermatology and Professor of Genetics & Development, and Vice Chair for Basic Science Research in Dermatology at Columbia University.

2   The Clinic Visit in 2018: Current Treatments for Alopecia Areata | Individuals Track
Dr. Maria Hordinsky will provide an in-depth presentation of everything you need to know about alopecia areata, including risks and benefits of current and evolving off-label treatment options. Dr. Hordinsky is Professor and Chair of the Department of Dermatology at the University of Minnesota and is recognized for her clinical expertise and research in alopecia areata.
 
3    Pediatric Alopecia Areata: Treatment Options for Children | Parents Track
Dr. Leslie Castelo-Soccio will share everything parents need to know about alopecia areata in children and adolescents, including the major differences between pediatric and adult patients, risks and benefits of current and evolving off-label treatment options. Dr. Castelo-Soccio is Assistant Professor of Pediatrics and Director of the Pediatric Dermatology research section at the Children's Hospital of Philadelphia. Her research focuses on pediatric hair disorders and inherited genetic skin conditions.
 
Support and Empowerment Sessions A–K | 2:00 pm—3:30 pm
Come as you are to share experiences, advice, support, and personal connections with others who understand. Select the topic that interests you most from our list of sessions focused on personal and/or social issues related to alopecia areata. Sessions will be conducted in a support group–style format with attendees sharing experiences and exchanging information.

A   Parents of Children (Girls) with Alopecia Areata | Parents Track
An exchange of ideas on being a parent of a girl with alopecia areata.
 
B   Parents of Children (Boys) with Alopecia Areata | Parents Track
An exchange of ideas on being a parent of a boy with alopecia areata.
 
C   Parents of Preteens with Alopecia Areata | Parents Track
An exchange of ideas on parenting a preteen with alopecia areata.
 
D   Parents of Teens with Alopecia Areata | Parents Track
An exchange of ideas on parenting a teen with alopecia areata.
 
E   Recent Diagnosis | Individuals Track
For those recently diagnosed with alopecia areata.  Come share your experience and learn you are not alone.
 
F   Women & Alopecia Areata | Individuals Track
An honest discussion on being a woman with alopecia areata.
 
G   Men's Poker Challenge | Individuals Track
Come enjoy a game of poker and discuss your challenges & triumphs of living with or supporting someone with alopecia areata.  Don't know how to play?  Come learn - this game is just for fun.  Poker chips, cards & fake money will be provided.
 
H   And Then There Is Us, We Who Have Had Alopecia Areata For A Long Time | Individuals Track
For everyone who has been living with alopecia areata for a long time; how our situation differs from the recently diagnosed.  This session will focus on how we have learned to cope (tricks of the trade), or not, and discovering new tools.  What is there yet to understand, feel or assimilate?
 
I   Dating & Alopecia Areata | Individuals Track
An in-depth look at how alopecia areata affects you and your dating life. 
 
J  Am I Okay?  Yes I Am!  Or I'll Fake It 'til I Make It | Individuals Track
An in-depth look at how alopecia areata affects you and your self-perception, your outlook on life and how to cope with your changing appearance and thrive despite this autoimmune diagnosis. 

K   Young Adults & Alopecia Areata | Young Adults Track
Come join your peers, make new friends, share your experiences with alopecia areata and learn about ways to get involved.
 
Community Empowerment Workshops 5-6 | 4:00 pm—5:30 pm

5   Cosmetic Demonstration Workshop | Individuals Track
Empower yourself by embracing your inner beauty letting your outer beauty shine. This workshop will be a theater-style display of all things cosmetic, including make-up, hairpieces, and accessories to keep you looking your best! Attendees may also work their way through five demonstration stations and observe skilled volunteers working with wigs, scarves, eye makeup, eyebrows, and shaving.
 
6   Awareness & Advocacy Workshop | General Track
Let your voice be heard! Learn from others about how to organize events, raise awareness and educate your local community about alopecia areata. And learn from a Legislative Liaison about how to educate your congressional representatives about alopecia areata and important issues related to our cause.
 

SATURDAY, JUNE 30th 

Registration and Information Display | 7:00 am—5:30 pm
 
Tortoise & Hair™ Conference Walk Check-In | 7:00am—7:30am
 
Exhibitor Displays | 8:00 am—8:00 pm
 
Tortoise & Hair™ Conference Walk | 7:30 am—9:30 am 
On this year’s Tortoise & Hair™ Conference Walk, you will follow a picturesque four-mile route bordering lakes and the resort’s golf course 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. Start your day with energy, beautiful scenery, and camaraderie while supporting others affected by alopecia areata. Be sure to wear comfortable shoes and don’t forget to wear your Tortoise & Hair™ t-shirt!
 
Children’s Alopecia Areata Conference Camp (Ages 5–17) | 9:45 am—5:15 pm
Lunch included today.
 
General Session | 10:30 am—12:00 pm | General Track
Learn how NAAF and others are advancing patient-centeredness and engagement in research, what we know so far about the impact of this trend, what we hope to learn in the future, and implications for the alopecia areata community. Hear about how you can get involved in research by using the information you have to make decisions that reflect your desired health outcomes.
 
Dr. Natasha Mesinkovska, NAAF’s Chief Scientific Officer, will share the latest progress of NAAF’s Treatment Development Program, our efforts to build a stronger patient-centered research community and how your involvement is critical to developing treatments for alopecia areata. Dr. Mesinkovska is Director of Clinical Research in the Department of Dermatology at the University of California Irvine.
 
NAAF President & CEO, Dory Kranz will discuss our increased focus on patient engagement, as well as opportunities for you to take action in your own health care and research that will lead to treatments. The collaboration of our global researchers continues to provide breakthroughs in understanding your alopecia areata and in charting the course for our future. And Gary Sherwood, NAAF Communications Director, will talk about the latest accomplishments of NAAF’s Advocacy and Awareness Programs and opportunities for you to take action.
 
Ebony Jean will share her passion for advocating on behalf of the alopecia areata community and being a voice for many. She will talk about her experiences as a NAAF Legislative Liaison—meeting with legislators, participating in FDA’s Patient-Focused Drug Development (PFDD) Meeting and share tips to help you find your voice so that treatments developed are meaningful to you! 
 
Ask the Experts | 1:30 pm—3:30 pm | General Track
This panel of medical and research experts from a variety of fields will answer your questions about different aspects of alopecia areata, including treatment, heritability, related conditions, emotional effects, environmental triggers, clinical trials, ongoing research, and more. Please submit your questions in advance via email to Jeanne@naaf.org so the experts can fully prepare for this popular session.
 
Young Adult Perspectives | 4:00 pm—5:00 pm | Parents & Young Adults Track
A panel of young adults will share their experiences growing up with alopecia areata and answer questions about situations other children may eventually face. They will also introduce the Youth Mentor Program (designed and led by young adults) and share this opportunity to add another level of support for our children.
 
Groove is in the Heart ‘90s Dance Party| 8:00 pm—Midnight | General Track
We’re gonna be “Livin’ La Vida Loca” and “Gettin’ Jiggy With It” at the ‘90s Dance Party! You’ll be doing “The Humpty Dance” and “Mambo No. #5” ’til midnight while enjoying ice cream or a drink at the no-host bar. And the adults-only private lounge is the 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 the next day’s Closing Ceremony.
 

SUNDAY, JULY 1st

NAAF Information | 9:00 am—1:00 pm
Gather informative materials for your personal use and to raise awareness in your local area.
 
Children’s Alopecia Areata Conference Camp (ages 5-17) | 9:15 am—11:15 am
 
Support and Empowerment Sessions L–U | 9:30 am—11:00 am
Come as you are to share experiences, advice, support, and personal connections with others who understand. Select the topic that interests you most from our list of sessions focused on personal and/or social issues related to alopecia areata. Sessions will be conducted in a support group–style format with attendees sharing experiences and exchanging information.
 
L  The Power of Us: Become a Social Ambassador | Young Adults Track
Get involved in our Power of Us Campaign and  bring young adult voices together collectively to help us spread the word and increase awareness of alopecia areata. Social Ambassadors are passionate about the alopecia areata community and want to harness their ded-ication into spreading NAAF’s messages to others through various communication channels. We welcome you and look forward to you adding your voice to the roar that will change lives.

M   Enriching the Elementary School Experience for Your Child (Girl) with Alopecia Areata | Parents Track
An exchange of ideas on how to make elementary school a positive experience for your girl.
 
N   Enriching the Elementary School Experience for Your Child (Boy) with Alopecia Areata | Parents Track
An exchange of ideas on how to make elementary school a positive experience for your boy.
 
O   Making the Most Out of Junior High for Your Tween with Alopecia Areata | Parents Track
An exchange of ideas on how to make junior high a positive experience for your tween.
 
P   Making the Most Out of High School for Your Teen with Alopecia Areata |Parents Track  
An exchange of ideas on how to make high school a positive experience for your teen.
 
Q   Women & Alopecia Areata | Individuals Track
An honest discussion on being a woman with alopecia areata.
 
R   Living the Active Live with Alopecia Areata | Individuals Track
For those who have changed their active lifestyle because of alopecia areata.  Join an honest discussion about how to feel comfortable and gain confidence to still do the activities you love.
 
S   Wigged Out and Loving It! | Individuals Track
A session for those who choose to wear a wig or other head covering. Share ideas about talking to friends, co-workers and family about the fact you wear a wig.
 
T   Alopecia Areata in the Workplace | Individuals Track
An exchange of ideas on how to deal with career challenges such as job interviews, communication with colleagues, and telling others about your alopecia areata.
 
U   Moving Beyond the Alopecia Areata Blues | Individuals Track
We've all been there.  The diagnosis, the stares from strangers, the feeling that we're the only one with this condition.  These - and so many others - are the alopecia areata blues.  But we're stronger than these blues, and this new and innovative support session will teach you the strategies to overcome and be a stronger, more self-assured you.
 
Hotel Check-Out | 11:00 am – 11:30 am
 
Closing Session | 11:30 am—1:00 pm | General Track
This year, as the conference comes to a close, inspirational guest speakers, Paula and Rosie Quinn will share their mother/daughter journey with alopecia areata since Rosie’s initial diagnosis at two-and-a-half years old. Without a clear cure, they turned to NAAF and were inspired—as well as empowered—to better the lives of all those with alopecia areata.  Emotions are high the entire weekend and Sunday provides a moving farewell, a time for bonding as a group, and a time for closure. Be sure you are in attendance to root for the winners of the dance party and Tortoise & Hair™ Conference Walk fundraising challenge as they are announced.
 
Good-bye Gathering | 1:00 pm—2:00 pm | General Track
Join your new and old friends before departing to the airport or beginning your long drive home. Be sure to exchange contact information with new friends to keep in touch throughout the year. Snacks and refreshments will be served.