17th Annual National Alopecia Areata Foundation International Conference
St. Louis, Missouri, July 11-14, 2002
Preliminary Program
Program Explanation
Continuous Weekend Activities
Children's Conference Camp
The Children's Conference Camp (CCC) continues through much of the weekend.
The children will be divided into three groups by ages; children
ages 5-10 (Kids) (Note: Kids must be enrolled in kindergarten
in the fall), ages 11-13 (Tweens), and ages 14-17 (Teens). A full
agenda of activities and support awaits children (with or without
alopecia areata). Dr. Richard Long will conduct sessions with
children. At a new time on Friday from 3:30 PM to 5:00 PM he also
will conduct a workshop for parents to encourage communication
and establish an understanding of the dynamics of growing up with
alopecia areata. The CCC program is again being carefully planned
by Shelley Matheny, founder of KidsAlong. KidsAlong will provide
one adult, experienced in child care and education, per six children.
In addition NAAF volunteers will be with the children to provide
support and to serve as role models. Many art projects are planned
as art is a great way for children to communicate their feelings,
and the setting of the conference will provide the atmosphere
for meaningful expression. Creative activities, sports, and more
will take place throughout the weekend.
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KIDS AND TWEEN ACTIVITIES
Kids and Tweens activities will begin at 8:00 AM on Friday, July
12, and will include a trip to the St. Louis Zoo and City Museum
leaving the hotel at 9:00 AM. Off-site excursions are for children
only. We welcome adults to stay with their children until they
are comfortable, then go on to their planned sessions.
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Teen Activities
The Teens (ages 14-17) will begin their activities at 7:00 PM on Thursday,
July 11, as they gather to meet each other in the Teen Meeting
Room. They will meet again Friday morning at 9:00 AM as they prepare
for their off-site excursion to the Gateway Arch and a riverboat
ride. Teens are invited to attend the Friday night Welcoming Reception.
Saturday includes lunch at the Hard Rock Cafe and a scavenger
hunt. A formal Teen Support Session will take place in the afternoon.
Teens will join all other conferees at the Meet Me in St. Louis
Dance Party on Saturday night. Sunday morning they will gather
again to bid farewell to newfound friends and to make plans to
see each other again in 2003. Their activities are also supervised
by KidsAlong.
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Young Adult Activities
This optional new group for ages 18-22 will begin their activities
on Thursday, July 11 at 7:00 PM in their own meeting room. This
group includes graduates of the Teen program and ones who want
to stay together to share their experiences. They will attend
many of the same activities as the Teens with the exception of
the Teen Support Session. Check the times for the young adult
activities.
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Greet and Meet Room
We will have many hours during the conference for you to gather in the Greet
and Meet Room to share your feelings and concerns, or just relax
as you make new friends. It is an ideal location to share makeup
tips. There will be a sign on the bulletin board near the registration
desk to let you know the location and hours of the Greet and Meet
Room.
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Exhibitors Displays
Exhibitors invite you to visit a variety of displays showing the many products
and supplies available for those with alopecia areata. Exhibition
times are from 11:00 AM to 8:00 PM on Friday, July 12 and from
12:00 PM to 4:00 PM on Saturday, July 13, and some may also choose
to exhibit items on Sunday morning, July 14 from 8:30 AM to 11:00
AM. All exhibitors are available for private appointments.
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Friday, July 12
Workshops
We invite you to attend one of the three support skills workshops that will
take place at 8:30 AM on Friday, July 12. There will be a networking
workshop for Support Group Leaders to discuss all aspects of running
a successful group, a networking workshop for Telephone Support
Contacts to discuss how to handle calls of support, and a presentation
for people who would like to learn how to provide support in their
local area.
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Health Insurance Panel
A panel of people who have taken initiatives in their local areas will discuss
their progress, share ideas and offer insight into the legislative
process at 9:45 AM on Friday, July 12. Both state and federal
programs will be discussed.
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Introductory/Orientation Session
At 11:30 AM, on Friday, July 12 Dr. Richard Long, Chair of the NAAF Mental
Health Committee, invites all conferees, especially first-timers,
to get acquainted, discuss pre-conference jitters, and gain feedback
on getting the most out of the conference experience.
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Public Awareness Panel
A panel of NAAF volunteers from around the United States and Canada will enlighten,
and inspire others to take a proactive role in public awareness
and/or local fund-raising at 1:30 PM on Friday, July 12.
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Child Development Workshop
This session is an opportunity for parents to meet with Dr.
Richard Long, who will help them understand how their child matures
into an independent person. He will focus on the similarities
and differences of children dealing with alopecia areata. It will
be held from 3:30 PM to 5:00 PM on Friday, July 12.
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Cosmetic Demonstration
A cosmetic presentation will take place from 3:30 PM to 5:15 PM on Friday,
July 12. NAAF volunteer Pat Reinhardt invites you to a video demonstration
of how to apply eyebrows and eyelashes. Other volunteers will
assist in perfecting your technique. Board Member Ann S. Hedges
will demonstrate creative ways to tie a scarf for a head covering.
You are encouraged to bring your favorite makeup products as supplies
are limited.
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Theme Facilitators Meeting
Starting at 5:30 PM Dr. Richard Long, Chair of the NAAF Mental
Health Committee, and Lisa Gallagher, NAAF Director of Support,
Government, and Public Affairs, will meet with theme session facilitators
to prepare them for the weekend ahead.
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Welcoming Reception
All teens and adults are welcome to this Friday evening social time¾an
opportunity for you to connect with old friends and meet new ones.
The reception will include light snacks and a no-host cash bar.
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Saturday, July 13
Fun Run/Walk
All are welcome to join the strong and healthy at 7:00 AM for an early morning
slow jog or a fast walk to get your blood flowing before a busy day. The route
will take you on a scenic journey.
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Opening Session
Saturday's Opening Session begins at 8:30 AM with a warm welcome from Jay Mahler,
NAAF board member and Conference Master of Ceremonies. Jay has
been a NAAF Support Group Leader in Ann Arbor, Michigan, since
1991. In addition to leading the session, Jay will share with
the audience his "Bald Journey through Life."
NAAF's Chief Executive Officer, Vicki Kalabokes, will give a
talk entitled "National Alopecia Areata Foundation in the
Public Eye 2001." Vicki will review what the Foundation,
staff, and volunteers accomplished in the year 2001.
Kurt Stenn, M.D., Chair of the NAAF Scientific Advisory Committee
and member of the NAAF Board of Directors, will discuss "Recent
Progress in Hair Research". He will explain how the clarification
of the human genome is helping hair researchers identify the molecules
that support hair growth. Dr. Stenn is the Chief Scientific Officer
of Juvenir Biosciences, Skillman, New Jersey.
Susan Mallory, M.D., is the Medical Advisor for the local St.
Louis Support Group. She is from Children's Hospital in St. Louis.
Dr. Mallory will discuss the "Clinical Aspects of Alopecia
Areata."
Richard Kalish, M.D.,Ph.D., Associate Professor, Department of
Dermatology, State University of New York at Stony Brook, has
in collaboration with Dr. Amos Gilhar, in Haifa, Israel, demonstrated
that white blood cells (T-cells) can cause hair loss in alopecia
areata. Recently they have found that pigment cells can be the
targets of these white blood cells. Dr. Kalish will review these
recent findings, and will discuss their possible application to
new therapies.
Margaret Baker, a resident of New York City, is a longtime NAAF
volunteer and support contact, a motivational speaker, a model,
and a member of the Screen Actors Guild. She recently was in the
film "Zoolander". As our inspirational speaker, Margaret
will share how she overcame the obstacles of being bald and how
she found the strength to become the successful person she is
today. Her talk "Turning Poison into Medicine" will
prove to be empowering for all.
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Medical Questions and Answers
Starting at 1:15 PM on Saturday, July 13, after lunch on your own, Dr. Kurt
S. Stenn will lead a panel of physicians and researchers answering
questions about alopecia areata.
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Theme Support Sessions
Following are descriptions of the Theme Support Sessions offered on Saturday
afternoon, July13. Determine your top choice, and then complete
the sign-up sheet. For example, to sign up for the session "Parenting
Issues" with a focus on teenagers, indicate A-3 on the sign-up
sheet.
- Parenting issues. For all parents.
Parents will meet in small groups to discuss coping within the
family unit, coping at school, and nurturing self-esteem. This
session will be more meaningful if you have attended the Child
Development Workshop on Friday, July 12.
- Parents of children in preschool through 5th grade
- Parents of children in 6th through 8th grades
- Parents of teenagers in 9th through 12th grades
- What's your role in helping your significant other?
For those who do not have alopecia areata. Learn how you can
better help yourself and your spouse to accept and cope.
- Mutual support for couples. For couples in which one
person has alopecia areata. Work together to accept and cope.
- Opening up to your friends. For those with alopecia
areata. Effective communication to bring you closer to others.
- You are a man with alopecia areata, now what? Only
for single men with alopecia areata. Social issues and concerns
about coping.
- You are a woman with alopecia areata, now what? Only
for single women with alopecia areata. Social issues and concerns
about coping.
- Seeing your beauty-inside and out. Only for women with
alopecia areata. The media and society's image of ideal appearance
influences how we see ourselves and how others view us.
- Become an informed and empowered patient. For you or
for you to help someone else with alopecia areata. Gain an informed
approach to treatment. Compare your expectations to the viewpoints
and practices of the medical community.
- Head coverings or not-your choice. For those with alopecia
areata. Finding comfort in your decision or transition.
- Humor--it can help! For those with or without alopecia
areata. Humor can be a great tool in accepting our hair loss
and in communicating with others. A serious discussion of the
lighter side.
- Living with alopecia areata since childhood. Only for
those with alopecia areata. Specific issues for those who have
grown up with alopecia areata.
- Explore deeper personal aspects and coping skills.
Only for those with alopecia areata who have attended previous
conferences. For those who are ready to take a close and serious
look at their own positive and negative emotions.
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Meet Me in St. Louis Talent Revue
The children's and teens' talent show, the Meet Me in St. Louis Talent Revue,
which is open to kids ages 5-22, has become a popular and heartwarming
event. Pride is evident in the faces of the children performing,
and the audience is captivated by the presentation. Make it a
special time for the performers by being part of their audience
on Saturday night, July 13, at 7:30 PM.
ATTENTION YOUNG PERFORMERS! Please inform the NAAF office if
you would like to participate in the Meet Me in St. Louis Talent
Revue. A mandatory dress rehearsal will take place in Grand Ballroom
F starting at 4:00 PM Saturday. Performers must have their costume,
music, instrument, etcetera with them. Remember: All acts are
limited to TWO MINUTES.
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Meet Me in St. Louis Dance Party
This festive Saturday event is for young and old. It is a time
to enjoy a lovely evening in the company of friends. Desserts
will be served and a no-host bar will be available as the music
plays. Dance hearty as dance contest winners will be selected
and announced at the Closing Session.
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Sunday, July 14
Theme Support Sessions
Following are descriptions of the Theme Support Sessions offered on Sunday.
Please complete the sign-up sheet.
- Panel discussion: Parents of adolescents and teens. For
all parents. A discussion and question-and-answer session to share experiences
and insights presented by parents of adolescents and teens.
- Humor helps you and your child cope. For
parents whose children have alopecia areata. Humor can be a
great tool in accepting hair loss—it can help you communicate
with your child and help your child communicate with others.
- Parents of adults with alopecia areata. For parents of adult
children with alopecia areata. Working together to accept and cope.
- What's your role in helping your significant other? For
those who do not have alopecia areata. Learn how you can better help yourself
and your spouse to accept and cope.
- Helping those you know or love. For those who do not have
alopecia areata. Play an important part in helping your sibling, adult child,
or friend accept and cope.
- Head coverings or not-your choice. For those with alopecia
areata. Finding comfort in your decision or transition.
- Become an informed and empowered patient. For you or for
you to help someone else with alopecia areata. Gain an informed approach to treatment.
Compare your expectations to the viewpoints and practices of the medical community.
- Issues for young adults. Only for those ages 18-30 with
alopecia areata. Family, college, social (dating anxieties), work, and career
issues.
- Seeing your beauty-inside and out. Only for women with
alopecia areata. The media and society's image of ideal appearance influences
how we see ourselves and how others view us.
- Humor--it can help! For those with or without alopecia
areata. Humor can be a great tool in accepting our hair loss and in communicating
with others-a serious discussion of the lighter side.
- Career challenges. Only for those with alopecia areata.
Dealing with an interview and communicating with fellow workers or clients.
- Living with alopecia areata since childhood. Only for those
with alopecia areata. Specific issues for those who have grown up with alopecia
areata.
- Explore deeper personal aspects and coping skills. Only
for those with alopecia areata who have attended previous conferences. For those
who are ready to take a close and serious look at their own positive and negative
emotions.
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Closing Session
Dr. Richard Long will give insight into facing challenges as we prepare to
leave the conference and make use of what we have learned. Emotions
are high the entire weekend and Sunday provides a moving farewell,
a time for bonding as a group, and a time for closure. All conference
attendees gather for this session on Sunday morning.
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Good-Bye Gathering
Come join your new and old friends before it's time to depart for the train
station or airport or to begin the long drive home. Light snacks
and a no-host bar will be available. Be sure to have your "Friend
Finder" booklet and pencils handy, as you will want names
and telephone numbers in order to keep in touch with other conferees
throughout the year.
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