In addition to the exclusive opportunity to participate in one-on-one consultations with medical or dental experts, here’s what’s on
the agenda. All workshops feature a question and answer period and are very casual, allowing the opportunity to share and learn
from each other.
Full Agenda*
Thursday, July 23, 2015
10 a.m. – 12 p.m. Registration and Meet Your Buddy
All attendees must begin here to receive their detailed
conference registration materials and name tags which are
required to attend all sessions and meal functions. First-time
attendees meet with their assigned “buddy,” who will be a
person or family who has attended other Conferences.
11 a.m. – 12 p.m.
First Timers’ Session
Family led.
Lunch on Your Own
12:45 p.m. – 5:15 p.m.
Kids’ Camp and Teen Camp
1 p.m. -1:15 p.m.
Welcome, from NFED Executive Director, Mary Fete
1:15p.m. – 1:40 p.m.
Pearls of Wisdom
NFED Family Liaisons
1:45 p.m. – 2:45 p.m.
What are Ectodermal Dysplasias?
Timothy J. Fete, M.D., M.P.H. will explain what the
ectodermal dysplasias are.
2:50 p.m. – 4 p.m.
Family Discussion Panel
Individuals and parents of all ages answer your questions
on ectodermal dysplasias based on their personal
experiences
4 p.m. – 5p.m.
Skin, Hair and Nails
Alanna F. Bree, M.D. will present information on how the
hair, nails, skin and sweat glands can be affected in the
ectodermal dysplasias and how to best treat them.
5 p.m. – 6:15 p.m.
Dinner
6:30 p.m. – 9:30 p.m.
Beach Party
Friday, July 24, 2015
8 a.m. – 8:45 a.m.
Breakfast/Morning Welcome
9 a.m. – 10 a.m.
Make Your Mark
Motivational Speaker, Keegan Johnson
11 a.m. – 12 p.m.
Eyes, Ears, Nose and Throat Concerns
Richard Alan Lewis, M.D., M.S. will address eye concerns
and how to treat them. Raj Sindwani, M.D., FACS, FRCS(C)
will present the latest treatments for ear, nose and throat
issues.
12 p.m. – 1 p.m.
Lunch – Designated tables allow families affected by the
same type of ectodermal dysplasia to meet one another.
1:15 p.m. – 4 p.m.
Syndrome Specific Sessions
4:15 p.m. – 5 p.m. – Workshops (choose one)
Pediatric & Adolescent Concerns
Timothy J. Fete, M.D., M.P.H.
Nutrition
Kathleen Motil, M.D., Ph.D.
Adult Life 101 - Careers, Dating, Becoming the Decision
Maker for Your Care, More
Heather McKelvie
5:30 p.m. – 7 p.m.
NFED’s Dinner Theatre – Enjoy dinner while watching the
Talent Show.
After the Talent Show, take time to enjoy the beautiful
scenery while meeting with your new friends.
Saturday, July 25, 2015
8:30 a.m. – 9:30 a.m. Breakfast and Good Morning from
our Family Conference Chair
All About Moms
Family led
8:30 a.m. – 11 a.m.
Dental Evaluations
Frank H. Farrington, D.D.S., M.S., Clark D. Stanford, D.D.S.,
Ph.D., J. Timothy Wright, D.D.S., M.S.
Man Talk
Family led. Join others in this informal session to
discuss issues that affected men and dads have.
11 a.m. – 12 p.m. Dental Workshops
9:45 a.m. – 10:45 a.m. (Workshops for Men, Women and
Parents)
Affected Women’s Session
Jill K. Powell, M.D.
Join this supportive group of older teens (15+),
affected and carrier women, mothers, and
grandmothers to discuss issues affected women and
moms have. Jill K. Powell, M.D. will also lead a
discussion of issues (i.e. breast issues, puberty,
pregnancy and childbearing, sexual issues) specific to
girls and women affected by ectodermal dysplasias
Pediatric Dental Issues
J. Timothy Wright, D.D.S., M.S. will address oral health
care issues children face, excluding dental implants.
Adolescent and Adult Dental Issues and Dental
Implants
Clark D. Stanford, D.D.S., Ph.D.
12 p.m. – 1 p.m.
Lunch
1:15p.m. – 2:15 p.m.
School Advocacy
Family led
Insurance Mentoring
Family led. Learn how to navigate the insurance
process to get you or your child’s dental care covered.
Ask the Experts
Meet one-on-one with members of the Scientific
Advisory Council to ask questions about your situation.
You will not need to make an appointment.
Family Story Time
Cosmetics & Hair Care for Women
Lindsay Harris
Cosmetic & Hair Session for Teens
Lindsay Harris
3 p.m.
Regional Meetings
3:15 p.m.
Conference Finale
Kids’ Finale
Research: Facial Recognition Study (15minute appointments will be scheduled throughout the duration of the conference.)
Kays’ Kids Camp and Teens Camp
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Children ages 0-11 will attend Kays’ Kids Camp while the adults are in sessions. A licensed and certified child care company will
manage Kids Camp. Teens 12-17 will participate in Teens Camp, which will include field trips.
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Kays’ Kids Camp will be managed by Tots on the Spot, LLC.
A well-planned schedule of activities will keep children between the ages of infant – 12 years old busy Thursday
afternoon, Friday and Saturday. Please complete the waiver that you receive upon registering for the conference and
bring them with you to the conference.
Additional activities have been scheduled by this year’s Family Conference Committee.
Teens will be kept busy with on-and off-site activities. In addition, a cosmetic and hair session by Lindsey Harris, a
session with Young Adults.
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Chance Auction - You can participate in our Chance Auction to help raise money to fund the Conference. Families are asked to
bring and donate one new item (or more!) for the auction.
* Agenda subject to change.
How to Register
Register for the Family Conference online at NFED.org by June 10, 2015.
Accommodations and Fees
We have secured a block of rooms at the Cheyenne Mountain Resort for the nights of Thursday, July 23 and Friday, July 24. This
year, the registration fee includes your sleeping accommodations (and all taxes, services charges and the facility fee) for
Thursday, July 23rd and Friday, July 24th; dinner on Thursday evening; breakfast, lunch and dinner on Friday; and breakfast and
lunch on Saturday; all conference materials; clinical consults; workshops; general sessions and all Kays’ Kids Camp and Teens
Camp activities. All family members staying at the Cheyenne Mountain Resort and participating in any conference activities must
register for the conference.
Single Occupancy Adult - $628
Double Occupancy Adult (includes 2 adults) - $880
Additional Child (birth -17) - $100
Additional Adult (age 18 and up) - $250
If you would like to attend the conference but will not be staying at the Cheyenne Mountain Resort, the registration fee is $250 for
adults (age 18 and up) and $100 for children (birth to age 17).
Scholarships
A limited number of scholarships are available. Apply online at NFED.org by Friday, April 17, 2015.
For more information, please contact:
Kelley Atchison
618-566-2020
[email protected]
Visit NFED.org.