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.

What happens if the conference is canceled due to COVID-19?

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!

Why Attend

COUNTLESS OPPORTUNITIES

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:

Registration

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.

ATTENDEEMAR 11
EARLY
APR 23
REGULAR
JUN 5
LATE
Individual
Age 18+
$475$550$625
Family
2 members of the same family
$900$1,050$1,200
Self-Advocate
Individual living with the full mutation1
$275$350$425
Sibling
Age 13–17
$275$350$425
Student
Note: Students must first request a discount promotion code2
$375$450$525
Single Day Admission
Friday or Saturday (does not include welcome reception or banquet)
$275$350$425

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 jen@fragilex.org. Additional instructions will be provided with your discount code.

COMING SOON

Location

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 Florida taken from Lake Eola park. Photo by Chad Sparkes.

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.

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Child Care

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.

QUESTIONS?

KiddieCorp is always available to answer any questions. Feel free to contact KiddieCorp by phone at (858) 455-1718 or by e-mail at info@kiddiecorp.com.

Looking Back

The 16th International Fragile X Conference in 2018 was held in Cincinnati, and we have 22 sessions available for you to check out.

A young attendee at the 2018 International Fragile X Conference.

   REGISTER

Don’t miss out on early-bird savings now through April 22.

COMING SOON

   BOOK HOTEL

Renaissance Orlando at SeaWorld
6677 Sea Harbor Drive
Orlando, FL 32821
Rate: $139 + optional $20 resort fee + fees/taxes

BOOK HOTEL

   SCHOLARSHIPS

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.

SCHOLARSHIPS

   CONFERENCE UPDATES

Sign up to receive notifications as conference details become available!

SIGN UP FOR CONFERENCE UPDATES

   MEET OUR 2020 SPONSORS

Learn more about sponsoring the 17th NFXF International Fragile X Conference: Connect your brand with our community.

Zynerba Pharmaceuticals conference sponsor logo display
Tetra Therapeutics sponsor logo display
Asuragen sponsorship logo

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 jayne@fragilex.org. You will hear in early April if your presentation was accepted.

CONFERENCE DATES

Thursday, July 16 – Sunday, July 19, 2020

CONFERENCE LOCATION

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.

SESSION LENGTH

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.

FORMAT REQUIREMENTS

PDFs of PowerPoint presentations and handouts are required.

PRESENTER AVAILABILITY

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.

PANEL SESSIONS

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.

INTERACTIVE SESSIONS

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

FAMILY-FRIENDLY TRACKS

Note: There is a limit of one co-presenter for Family Friendly presentations.

TRACKSUGGESTED SESSIONS
Young Children with Fragile X SyndromeEarly intervention/finding out about local services, daily living strategies, toilet training, language, panel.
EducationIEPs (all components), learning strategies/behavior, middle/high school, panel.
Development and BehaviorSensory diet/hyperarousal, addressing anxiety, school ideas, panel.
FemalesDaily living strategies, executive function/anxiety, moms with a full mutation, panel.
Medications/ Clinical TrialsWhen/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 SyndromeHigh 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 IssuesFXTAS, FXPOI/reproductive options (IVF/PGD), FXAND, panel.
SiblingsLife with a special needs sibling, daily tips and tricks.
Self-AdvocatesMaking 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.


Education
IEPs (all components), learning strategies/behavior, middle/high school, panel.


Development & 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-Advocate
Making friends, social media, employment, panel for females, panel for males, food/nutrition, yoga/exercise, transportation.


Other?
You may suggest other topics for consideration.


RESEARCH TRACKS

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

QUESTIONS?

Please email Jayne Dixon Weber at jayne@fragilex.org.

Thank you, and we look forward to your presentation.

Sponsorship

SPONSORSHIP PROSPECTUS

Our presentation that answers the question: What makes the NFXF Fragile X Conference unique?

SPONSORSHIP OPPORTUNITIES

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.

EXHIBITOR OPPORTUNITIES

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.

SPONSORSHIP APPLICATION

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 kristin@fragilex.org.

Conference FAQs

The NFXF continues to move forward with the Conference and will make every effort to hold it as planned. If it becomes apparent that doing so may jeopardize public health we may have to consider other options.

Should the Conference be canceled for 2020 because the World Health Organization, Centers for Disease Control and Prevention, or other applicable government agency requires public gatherings be limited during the time period of the Conference, your registration fee will be refunded with no penalty.

Additionally, hotel rooms booked under the Conference rate are fully refundable up to 48 hours prior to check-in.

For those traveling to the conference by air, we recommend considering refundable tickets.  Many airlines offer optional travel protection, we recommend you review the policies and conditions included and work directly with the airline for specific questions.

Registration rates range depending on who you are and when you register. Self-advocates, siblings, full-time college students, and families (by groups of 2), are all discounted from the regular individual price. And if you register early—on or between March 11 and April 22—you’ll save $75 off the regular rate period.

In the list below, all the rates—with the exception of the last item: Single Day Admission—are for the full conference, which runs Thursday, July 16 through Sunday, July 19. Single day admission is good for either Friday, July 17 or Saturday, July 18. Registration is open now.
ATTENDEEEARLY // MAR 11–APR 22REGULAR // APR 23–JUN 4LATE // JUN 5–JUL 10
Individual Age 18+$475$550$625
Family 2 members of the same family$900$1,050$1,020
Self-Advocate Individual living with the full mutation1$275$350$425
Sibling Age 13–17$275$350$425
Student Note: Students must first request a discount promotion code2$375$450$525
Single Day Admission Friday or Saturday$275$350$425

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 jen@fragilex.org. Additional instructions will be provided with your discount code.

Other costs may include airfare, food, tips, transportation, etc. Attendees bear the sole responsibility for hotel and travel arrangements and expenses.

Yes, early bird registration is on or between March 11 and April 22. Also see: How much does the conference cost?

The hotel does not provide an airport shuttle. Renaissance Orlando at SeaWorld is 12 miles from the Orlando International Airport (MCO), which has a very thorough listing of transportation options.

Cancellation requests must be made by sending an email to Jen Barber at jen@fragilex.org. Refunds are possible less a $50 administration fee if you cancel on or before June 16, 2020. After June 16, 2020, we regret that no refunds are possible. All refunds will be sent within 30 days after the conclusion of the conference.

If you are a full-time college student, you may request to be issued a discount promotion code. Using your school student email address, please email a copy of your current dated student ID to Jen Barber at jen@fragilex.org.
Yes, and we recognize the challenges of finding quality child care for your children while attending the conference and are pleased to be able to subsidize 50% of the daily fees thanks to our generous supporters. Advanced registration deadline is June 19, 2020.

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.

First, here are a few resources from the Renaissance Orlando at SeaWorld hotel website, and while at the hotel they can help you find local dining based on your specific request:

  • Hotel details, including map, airports and information, arrival and check-in, parking information, policies, business services, and amenities
  • Dining information for the hotel plus surrounding areas.
  • Local activities, on-site fitness center, spa, swimming, golf, bowling, and more
  • Local attractions (also see What else can I do in Orlando? and possible discounts from Visit Orlando)

Convenience and Grocery Stores

The nearest convenience store is:

7-11 (1.8 miles)
6026 Destination Pkwy, Orlando, FL 32819
(407) 351-9060
Hours: 24 Hour
» Print Driving Directions*

The two nearest grocery stores are 1.7 and 2.2 miles from the hotel, with several more in the surrounding area. These are the two closest:

Publix Super Market at Williamsburg Downs Shopping Center (1.7 miles)
5350 Central Florida Pkwy, Orlando, FL 32821
(407) 465-1139
Hours: 7am-10pm
» Print Driving Directions*

National Supermarket – International Drive South (2.2 miles)
11701 International Dr Suite 600, Orlando, FL 32821
(407) 778-1949
Hours: 8am-12am
» Print Driving Directions*

*These are provided for your convenience, but are in most cases just one way to get to each destination. Please see Google Maps (or other map resources) for more.

No, the hotel does not allow pets. Service animals are permitted. Please work directly with the hotel ahead of time to ensure the smoothest experience.

» View general hotel amenities

» View conference special pricing and optional resort fee amenities

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