Detailed Program
 

Thursday, June 18

1:00 pm - 6:00 pm
Registration and Tortoise & Hair™ Check-In
Attendees begin their conference experience at registration where they will receive their portfolios with detailed information and name badges that are required to attend sessions. Tortoise & Hair™ Conference Walk participants may also pick up their t-shirts here after submitting their online Donation Page (or Pledge Sheet) or paying an additional fee ($25 per person/$50 per family).
1:00 pm - 7:30 pm
Exhibitor Displays
NAAF Conference Exhibitors invite you to visit a variety of displays showcasing the many products and supplies available for people with alopecia areata.

1:00 pm - 7:45 pm

Children's Alopecia Areata Conference Camp (Ages 5-17)

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.

2:00 pm - 4:00 pm
Meet The Exhibitors
This is a special time to meet with the exhibitors to discuss and ask questions about their products. Snacks and refreshments will be served.
4:00 pm - 5:30 pm
Advocacy Day 101 Workshop
BRAND NEW for 2020 is this unique workshop which will make you and your state’s advocacy team even more effective when you go to Capitol Hill the next morning.  This workshop will review the three “asks” we’ll make of our legislators, give your group members the opportunity to tell your individual patient stories, and select the story which best illustrates why we’re asking our lawmakers’ help.  Additionally, seasoned Legislative Liaisons from NAAF’s Advocacy Committee will be meeting with each group to provide helpful tips and help answer any questions you may have about your upcoming Hill Day experience.    

6:00 pm - 7:30 pm

Veteran & VIP (First-Timer) Welcome Reception

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.

Friday, June 19

Description Speakers

7:30 am - 8:00 am

Advocacy Day Packets and Tortoise & Hair™ Check-In

Capitol Hill Packets, which will include your schedule for congressional meetings as well as materials to leave with the congressional staff, will be distributed. You must have your packet to attend the Advocacy Day Prep Session. And don’t forget to wear your Tortoise & Hair™ t-shirt to Capitol Hill.

8:00 am - 9:30 am

Advocacy Day Prep Session

Our emcee, Maureen McGettigan, will welcome everyone, especially first-timers, to get acquainted and to learn how to get the most out of your conference experience. Gary Sherwood, NAAF’s Communications Director, will open the Capitol Hill Day prep session with recent accomplishments of NAAF’s Advocacy Program and the critical impact you can have by building relationships with your congressional representatives.

Our guest speaker, Natalie Mamerow, will enlighten the group about her work as a NAAF Legislative Liaison and share tips for personal visits with your congressional representatives.

This session will close with our final speaker, Dane Christiansen, Vice President of the Health and Medicine Counsel of Washington, where he has specialized in engaging Members of Congress on issues impacting medical research and patient care for nearly nine years. Dane will review tips on how to most effectively talk with congressional staff about our specific message, key talking points, and the schedule of the day, and he will answer last-minute questions.

NAAF will arrange the meetings with your US Senators and Representatives. Pre-conference webinars will help to prepare you for this exciting Advocacy Day!

8:00 am - 5:30 pm
Registration and Information Display

9:30 am - 3:30 pm

Capitol Hill Visits and Tortoise & Hair™ Walk! (All Adults & Kids!)

This year’s Tortoise & Hair™ will begin as all attendees set off together for Capitol Hill, where we’ll pause for an epic group photo on the famous steps, and then continue on to our group meetings with US Senators and Representatives, where we will educate them about alopecia areata and the key issues related to our cause. You will be walking approximately five miles along The Hill and halls of power, so be sure to wear comfortable shoes!

12:00 pm - 7:00 pm
Exhibitor Displays

3:30 pm - 4:30 pm

Capitol Hill Debriefings

Optional Debriefings with NAAF’s Gary Sherwood or staffers from the Health and Medicine Counsel of Washington to give your reports and go over next steps to finalize your advocacy efforts will be offered at the Longworth and Rayburn House Office Buildings on Capitol Hill.

3:30 pm - 5:45 pm

Children's Alopecia Areata Conference Camp (Ages 5-17)

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.

4:30 pm - 5:30 pm

Alopecia Areata Doc Talk 1 - Genetics, Immunology and Targeted Therapies in Alopecia Areata

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, Professor of Genetics & Development, and Vice Chair for Basic Science Research in Dermatology at Columbia University.

4:30 pm - 5:30 pm

Alopecia Areata Doc Talk 2 - Current Treatments for Adults with Alopecia Areata

Dr. Jerry Shapiro will provide an in-depth presentation of key things you need to know about alopecia areata, including the risks and benefits of current and evolving off-label treatment options. Dr. Shapiro is Professor of Dermatology at the New York University Langone Medical Center and is a leading expert in clinical studies involving alopecia areata.

4:30 pm - 5:30 pm 

Alopecia Areata Doc Talk 3 - Pediatric Alopecia Areata: Treatment Options for Children

Dr. Leslie Castelo-Soccio will share key things parents need to know about alopecia areata in children and adolescents, including the major differences between pediatric and adult patients, and the 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.

7:00 pm - 10:00 pm
Washington Nationals Game at Nationals Park (Suggested Activity)
The Nationals are teaming up with the National Alopecia Areata Foundation to raise awareness! Come join your peers, make new friends and support a great cause, as the Nationals take on the Atlanta Braves at 7:05 pm on Friday, June 19, at Nationals Park. Specially priced tickets are available for guests that are participating in the NAAF Conference. Registered attendees can purchase Scoreboard Pavilion tickets ($22 per ticket) online at www.groupmatics.events/NAAF0619.

 

Saturday, June 20

8:00 am - 5:00 pm
Registration and Information Display

8:15 am - 5:15 pm

Children's Alopecia Areata Conference Camp (Ages 5-17)

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.

8:30 am - 10:30 am
General Session
Drs. Jerry Shapiro, Leslie Castelo-Soccio and Angela Christiano, leaders of the previous Alopecia Areata Doc Talks, will take the stage to share an overview of the information that was covered in their substantive breakout sessions.

Dr. Natasha Mesinkovska, NAAF’s Chief Scientific Officer, will share the latest progress from 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 share key accomplishments and opportunities for you to take action.

Sanah Jivani, founder and CEO of the Love Your Natural Self Foundation, will speak on her own experience with alopecia areata, and how it’s inspired her to help others through public speaking, TV appearances and fundraising.  A dual degree student at the University of Pennsylvania, Sanah was named a Harry S. Truman Scholar and was featured on Good Morning America as a subject of Robin Roberts’ “Striver Thursday” for her work on behalf of others.  

And a panel of biopharmaceutical industry experts will discuss findings from recent clinical trials, including challenges and opportunities in drug development for alopecia areata. Learn and provide feedback to become empowered in your involvement in this exciting research.

8:30 am - 7:30 pm

Exhibitor Displays

NAAF Conference Exhibitors invite you to visit a variety of displays showcasing the many products and supplies available for people with alopecia areata.

10:45 am - 12:15 pm
Community Empowerment Workshop 1 - It's OK to Feel Sad
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 this condition. Workshop leader Matt Kelley is a licensed Marriage and Family Therapist, former NAAF Support Group Leader and longtime volunteer.
10:45 am - 12:15 pm
Community Empowerment Workshop 2 - Building Resilience: The Role of Character Strengths
Character strengths are different from gifts or talents. Gifts and talent describe what you do well.  Character strengths describe the essence of who you are, at your core. They describe your distinctive approach to life and how you best manage the opportunities and challenges it brings. We will discuss with families the role of mindful focus and how to leverage your unique character strengths, to build resilience and improve your quality of life for families while navigating the unpredictable mental/emotional journey of alopecia areata. Workshop leader, Dr. Renee Thomason, is a Board Certified Medicine Physician, and trained in Mindfulness Based Strength Practices and Strength Coaching.
10:45 am - 12:15 pm
Community Empowerment Workshop 3 - Two Ways to Help - Two Ways to Mentor!

Looking to make a difference? NAAF now offers TWO exciting programs for young people to help others with alopecia areata.  Our popular 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. And our NEW Legislative Mentor program pairs young people not yet of voting age to learn from peers just like themselves, how they can be advocates too.  NAAF’s Communications Director, Gary Sherwood, along with Youth Mentor Program Coordinator, Nell Sanders, and select Legislative Mentors will facilitate this training workshop.

10:45 am - 12:15 pm
Community Empowerment Workshop 4 - Child Development and Resiliency
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.
12:15 pm - 1:30 pm
Facilitator Luncheon
Volunteer leaders of Conference Support and Empowerment Sessions are invited to learn strategies and best practices for facilitating discussion groups from Dr. Richard Long. Dr. Long holds a doctorate in counseling from George Washington University and has been a longtime mental health consultant for NAAF.
1:30 pm - 3:30 pm
Ask the Experts
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.
4:00 pm - 5:00 pm
Young Adult Perspectives
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 Young Adult Mentorship program and share this opportunity to add another level of support for our children.
4:00 pm - 5:30 pm
Support & Empowerment Session A - Women & Alopecia Areata
An honest discussion on being a women with alopecia areata. This session will be divided by age with those 30 and under meeting in their own circle.
4:00 pm - 5:30 pm
Support & Empowerment Session B - Awareness & Advocacy
Let your voice be heard! Learn from NAAF Communications Director, Gary Sherwood, and others about how to organize events, raise awareness and educate your local community about alopecia areata. And hear from NAAF Legislative Liaisons about how to educate your congressional representatives about alopecia areata and important issues related to our cause
4:00 pm - 5:30 pm
Support & Empowerment Session C - Exploring Your Identity with Alopecia Areata
Has your perception of yourself changed since being diagnosed with alopecia areata? Explore thoughts and ideas on how to come to terms with your new look and gain a more positive outlook on life.
8:00 pm - 11:45 pm
Dancing Through the Decades Dance Party!
Whether you prefer the Twist, the Hustle or the Macarena, you’re gonna be dancing all night to a mix of favorites from the ’50s up through the ‘60s, ‘70s, and 80s right up to today! And when you’re not doing the Vogue and Electric Slide, you can enjoy ice cream or a drink at the no-host bar. Or just chill at our adults-only private lounge. But don’t rest too long ’cause we’re going to be looking for the best dancers to honor at next day’s closing ceremony. Hammer time!

Sunday, June 21

9:00 am - 1:00 pm
NAAF Information Display
Gather informative materials for your personal use and to raise awareness in your local area.

9:15 am - 11:15 am

Children's Alopecia Areata Conference Camp (Ages 5-17)

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.

9:30 am - 11:00 am
Support & Empowerment Session D - Enriching the Elementary School Experience for Your Child (Girl) with Alopecia Areata
An exchange of ideas on how to make elementary school a positive experience for your girl.
9:30 am - 11:00 am
Support & Empowerment Session E - Enriching the Elementary School Experience for Your Child (Boy) with Alopecia Areata
An exchange of ideas on how to make elementary school a positive experience for your boy.
9:30 am - 11:00 am
Support & Enpowerment Session F - Make the Most Out of Junior High for Your Tween with Alopecia Areata
An exchange of ideas on how to make junior high a positive experience for your tween.
9:30 am - 11:00 am
Support & Empowerment Session G - Make the Most Out of High School for Your Teem with Alopecia Areata
An exchange of ideas on how to make high school a positive experience for your teen.
9:30 am - 11:00 am
Support & Empowerment Session H - Dating and Alopecia Areata
An in-depth look at how alopecia areata affects you and your dating life.
9:30 am - 11:00 am
Support & Empowerment Session I - Alopecia & the LGBTQ+ Experience
Join others from the JGBTQ+ community and their loved ones for an open-ended conversation about the unique experiences that our diverse community has within the larger alopecia areata family.
9:30 am - 11:00 am
Support & Empowerment Session J - Men's Issues with Alopecia Areata in Daily Life & Every Day
An honest discussion for men about living with alopecia areata and supporting those with alopecia. Come give and get support.
9:30 am - 11:00 am
Support & Empowerment Session K - Living the Active Life with Alopecia Areata
For those who have changed their active lifestyle and those who decided to stay active in spite of alopecia areata. Join an honest discussion on how to feel comfortable and gain confidence to still do the activities you love.
9:30 am - 11:00 am
Support & Empowerment Session L - How Do You Show Up In the World with More Confidence?
Do you struggle to feel confident in your own skin? In this session you will learn about different notions of self-confidence, your struggle to feel confident and you will learn three strategies to help you showing up in the world with more confidence.

9:30 am - 11:00 am

Support & Empowerment Session M - Young Adults

Alopecia areata topics unique to those under 30 years of age.

For those under 30 years of age with alopecia areata.

11:15 am - 11:30 am
Hotel Check-Out
11:30 am - 1:00 pm
Closing Session
Guitar virtuoso Molly Tuttle attended the NAAF conferences as a child before returning to the conferences in 2017 as an entertainer, playing before our Opening, General and Closing sessions, as well as performing at the Kids Camp.   Just as important, she serves as an inspiration to our community, twice being named International Bluegrass Music Association’s Guitar Player of the Year, and winning “Instrumentalist of the Year” at the 2018 Americana Music Awards.  Having released her critically acclaimed debut album When You’re Ready in 2019, Molly will talk – and hopefully sing! – about her experiences with alopecia areata, and how having the disease did not stop her from achieving her goals.    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 cheer for the winners of the dance party and Tortoise & Hair™ Conference Walk fundraising challenge as they are announced.
1:00 pm - 2:00 pm
Goodbye Gathering
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.