NFXF International Fragile X Conference
The NFXF International Fragile X Conference is the largest of its kind in the world. This biennial event brings professionals, caregivers, self-advocates, and family members together in one place—a truly unique experience for a community all-too-familiar with the question: Fragile what? In addition to providing a space for friendship and solidarity, sessions focus on strategies and techniques for living with Fragile X, as well as an opportunity to discover emerging research and opportunities.
17th NFXF International Fragile X Conference
JULY 16–19, 2020
RENAISSANCE ORLANDO AT SEAWORLD | ORLANDO, FL
We’re doing it again, this time in Orlando! The NFXF biennial International Fragile X Conference brings together people who live with Fragile X, but it also brings together their parents and families, physicians, medical specialists, allied health professionals, educators, and so many more. While we don’t yet have the agenda finalized—look for a draft in mid-April—here’s some highlights of what we do know (as of MAR 25):
- Conference scholarship applications are now closed. If you applied, you will be notified by April 6, 2020. Please do not register for the conference until you have received the award notification.
- Registration is now officially open—and early birds can save if you register by April 22. Keep reading for more information, or jump directly to our registration page.
- We’ve added information about daily and hourly child care through KiddieCorp. We are pleased to be able to subsidize 50% of the daily fees thanks to our generous supporters. See Child Care below for more information and to register.
- We’ve added information and several downloads to the Sponsor tab for those interested in joining us as a sponsor or exhibitor.
- This year’s venue, Renaissance Orlando at SeaWorld, is now booking reservations.
- This year’s keynote speakers are Dr. Peter Todd, Dr. Nicole Tartaglia, and Emily Allen—more details to come!
Sure, theme parks and shopping are fun, but the real reason to attend this year’s conference are the countless opportunities.
Doctors (and other professionals) will tell you it’s the only conference they go to where they can interact with people with FX disorders, but that goes both ways. This is a one-of-a-kind event to socialize with and pick the brains of doctors, parents, educators, researchers—no other event gathers together so many people who are passionate about improving the lives of individuals and families living with Fragile X. This July, join us for:
EARLY BIRD PRICING NOW OPEN
All multi-day registrations include the welcome reception and the banquet on Saturday evening.
Please note: If you have or plan to apply for a conference scholarship, please do not register for the conference until you have received the award notification. Awards will be announced by April 6, 2020.
2 members of the same family
Individual living with the full mutation1
Note: Students must first request a discount promotion code2
|Single Day Admission|
Friday or Saturday (does not include welcome reception or banquet)
1A self-advocate is an individual living with a full mutation and plans to attend Self-Advocate educational sessions. Self-advocates age 13–17 must be accompanied by a registered family member or legal guardian. Self-advocates 18 and older who wish to attend sessions alone must be independent, as these sessions are not monitored with regard to the comings and goings of participants. If additional support is needed, they must be accompanied by a parent, legal guardian, or caregiver while attending Self-Advocate sessions.2To request a discount code, use your school student email address (“from”) and email a copy of your current, dated student ID to Jen Barber at firstname.lastname@example.org. Additional instructions will be provided with your discount code.
RENASSANCE ORLANDO AT SEAWORLD
We have arranged for special pricing and you can book your rooms now at the Renaissance Orlando at SeaWorld.
Renaissance Orlando at SeaWorld »
6677 Sea Harbor Drive
Orlando, FL 32821
Room prices are $139 for one to four occupants plus fees and taxes (current occupancy and sales tax: 6% / 6.5%). An optional $20 resort fee covers the following (if you decline the optional fee, all rooms come with complimentary high speed internet):
- Enhanced wireless in-room internet.
- Transportation to Disney World, Universal Studios, and the Orlando Premium Outlets (Vineland Ave. Location). Please note that the hotel does not provide shuttle service from the airport.
- Welcome Resort Beverage: Two coupons per room, per stay to include beer and wine.
- Breakfast for children under 12 (2 children per 1 adult purchase, Tradewinds Restaurant).
- 10% discount on dinner at Tradewinds Restaurant only (alcohol not included).
THINGS TO DO IN ORLANDO
Orlando is the home to more than a dozen theme parks, including Walt Disney World and its Magic Kingdom, Epcot, and numerous water parks. And you won’t want to miss Universal Orlando, which offers Universal Studios and Islands of Adventure, both straddled by the Wizarding World of Harry Potter. Or, if theme parks aren’t your thing, check out the Harry P. Leu Gardens, an amazing 50-acre botanic garden and estate on Lake Rowena.
You might also be interested in the Orlando Museum of Art, or the Charles Hosmer Morse Museum of American Art and its extensive Louis Comfort Tiffany collection. The Orlando Science Center’s hands-on exhibits and planetarium shows is another family favorite.Available Discounts: We worked with Visit Orlando, the official tourism association for Orlando, to provide discounts to area attractions. Learn more about the many fun and interesting things to do in and around Orlando and the discounts available when you show your NFXF International Fragile X Conference badge.
KIDDIECORP ON-SITE CHILDREN’S PROGRAMS
The NFXF recognizes the challenges of finding quality child care for your children while attending the conference and is committed to helping. We are pleased to be able to subsidize 50% of the daily fees thanks to our generous supporters.
REGISTRATION — DEADLINE JUNE 19, 2020
Register early as availability is limited and handled on a first-come, first-served basis. KiddieCorp must receive both the registration form and payment in full to hold reservations. Although every effort will be made to accommodate on-site registrations, there is no guarantee and is not recommended.
The 16th International Fragile X Conference in 2018 was held in Cincinnati, and we have 22 sessions available for you to check out.
Don’t miss out on early-bird savings now through April 22.
Renaissance Orlando at SeaWorld
6677 Sea Harbor Drive
Orlando, FL 32821
Rate: $139 + optional $20 resort fee + fees/taxes
Conference scholarship applications are now closed. If you applied, you will be notified by April 6, 2020. Please do not register for the conference until you have received the award notification.
Sign up to receive notifications as conference details become available!
MEET OUR 2020 SPONSORS
Learn more about sponsoring the 17th NFXF International Fragile X Conference: Connect your brand with our community.
Thank you to the following NFXF Chapters and Community Partners for underwriting the conference through sponsorship and by providing scholarships.
Call for Presentations
The call for presentations is now closed. If you have any questions about the process or about your submission, please contact Jayne Dixon Weber at email@example.com. You will hear in early April if your presentation was accepted.
Thursday, July 16 – Sunday, July 19, 2020
Renaissance Orlando at SeaWorld, Orlando, Florida
NUMBER OF BREAKOUT SESSIONS
There will be reduced number of available sessions for presentations due to the conference being a full day shorter. As a result, we anticipate there will be an increased number of posters and we are planning two poster presentation times.
Breakout sessions vary from 60 to 75 minutes. Once you are assigned a day and time, be sure to check the length of your time slot.
PDFs of PowerPoint presentations and handouts are required.
All prospective presenters must be available to present during any breakout session time slot on Friday and Saturday, July 17–18, in order to give us maximum flexibility in finalizing the agenda.
Each time slot will have at least one panel; there will be a panel for each of the tracks listed below. You may be asked to be part of a panel, in lieu of or in addition to your talk. A moderator will be assigned to each panel and be responsible for coordinating the panel presentations and responses to participants. You may also create your own panel for one of the tracks and submit that as your presentation. Please limit the total number of participants to four people.
Please focus your presentations on strategies and/or solutions and leave a minimum of 15–30 minutes (depending on session length) to answer questions. We are looking for presentations that are based on the latest information and best practices.
SIBLING & SELF-ADVOCATE SESSIONS
Presentations by siblings and self-advocates will be considered.
WHAT TO INCLUDE IN YOUR PROPOSAL
- Presentation type: Family-Friendly or Research
- Track (see list below)
- 2–3 Learning Objectives (Family-Friendly only)
- Presentation title
- Brief presentation description, suitable for all ages
- Presenter (primary and co-presenters) contact information, biography, photo/head shot
Note: There is a limit of one co-presenter for Family Friendly presentations.
|Young Children with Fragile X Syndrome||Early intervention/finding out about local services, daily living strategies, toilet training, language, panel.|
|Education||IEPs (all components), learning strategies/behavior, middle/high school, panel.|
|Development and Behavior||Sensory diet/hyperarousal, addressing anxiety, school ideas, panel.|
|Females||Daily living strategies, executive function/anxiety, moms with a full mutation, panel.|
|Medications/ Clinical Trials||When/where do I start? Medication options and clinical trials/studies, visiting an FXCRC (Fragile X Clinical & Research Consortium) clinic and doctor, panel.|
|Adults With Fragile X Syndrome||High school/transition to adulthood, employment, daily living (cooking, nutrition, self-care), living settings, medical issues, addressing behaviors, open question panel (most adult sessions will be panels).|
|Premutation Carrier Issues||FXTAS, FXPOI/reproductive options (IVF/PGD), FXAND, panel.|
|Siblings||Life with a special needs sibling, daily tips and tricks.|
|Self-Advocates||Making friends, social media, employment, panel for females, panel for males, food/nutrition, yoga/exercise, transportation.|
|Other?||You may suggest other topics for consideration.|
TRACK // SUGGESTED SESSIONS
Young Children With Fragile X Syndrome
Early intervention/finding out about local services, daily living strategies, toilet training, language, panel.
IEPs (all components), learning strategies/behavior, middle/high school, panel.
Development & Behavior
Sensory diet/hyperarousal, addressing anxiety, school ideas, panel.
Daily living strategies, executive function/anxiety, moms with a full mutation, panel.
When/where do I start? Medication options and clinical trials/studies, visiting an FXCRC (Fragile X Clinical & Research Consortium) clinic and doctor, panel.
Adults With Fragile X Syndrome
High school/transition to adulthood, employment, daily living (cooking, nutrition, self-care), living settings, medical issues, addressing behaviors, open question panel (most adult sessions will be panels).
Premutation Carrier Issues
FXTAS, FXPOI/reproductive options (IVF/PGD), FXAND, panel.
Life with a special needs sibling, daily tips and tricks.
Making friends, social media, employment, panel for females, panel for males, food/nutrition, yoga/exercise, transportation.
You may suggest other topics for consideration.
If your presentation is basic or clinical science, it will automatically be assigned as a research session. From there, topics fall under all Fragile X, Fragile X Syndrome, FXTAS, FXPOI, other premutation conditions.
Research sessions are a series of 15-minute presentations, which means each is broken down to roughly 5-6 minutes for the presentation, 5-6 minutes for questions, and 2-3 minutes to switch presenters). The last presenter is responsible for keeping time.
If you have a research abstract: You will have fields to both upload your abstract and list your authors/institutions. There will be no co-presenters on Research Abstracts
Please email Jayne Dixon Weber at firstname.lastname@example.org.
Thank you, and we look forward to your presentation.
Our presentation that answers the question: What makes the NFXF Fragile X Conference unique?
Sponsorship of the 17th Fragile X Conference connects organizations directly with members of the Fragile X community and signifies a strong commitment to improve the lives of individuals and families living with Fragile X and the associated disorders.
As an exhibitor, you will have almost three full days to showcase your staff, services and/or research opportunities, and you will be able to interact with the nearly 1,000 parents, research and treatment professionals and leaders in attendance.
Choose your level of sponsorship and submit your application.
If you are interested in becoming a sponsor, please email Kristin Bogart, Director of Development, at email@example.com.