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 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. 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. 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.
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