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—a truly unique experience for a community all-too-familiar with the question: Fragile what? In addition to providing the opportunity for friendship and solidarity, sessions focus on strategies and techniques for living with Fragile X, as well as providing access to emerging research and opportunities.

The 18th Biennial NFXF International Fragile X Conference

JULY 14–17, 2022 | SAN DIEGO

We’re looking forward to seeing you at the San Diego 18th NFXF International Fragile X Conference! This biennial conference presents a unique opportunity for nearly 1,000 parents and professionals from around the world to gather and learn the latest about Fragile X. The conference is geared toward all members of the Fragile X community: family members, caretakers, professionals, and researchers. There are even special sessions for individuals living with Fragile X syndrome.

Let us know if you have any questions, and if you’re not already on our email list, be sure to sign up for conference updates.

Preliminary Agenda

THURSDAY JULY 14th

  • 12:00 PM — Registration Opens
  • 5:30 PM – 7:00 PM — Kickoff Reception

FRIDAY, JULY 15th

  • 8:00 AM – 9:00 AM — Keynote, Dr. Nicole Tartaglia
  • 9:00 AM – 4:30 PM — Breakout sessions
  • 4:30 PM – 6:00 PM — Poster Reception

SATURDAY, JULY 16th

  • 8:00 AM – 9:00 AM — Keynote, Dr. Liz Berry-Kravis, Dr. Craig Erickson, Dr. Randi Hagerman
  • 9:00 AM – 4:00 PM — Breakout sessions
  • 5:30 PM – 8:30 PM — Farewell Party

SUNDAY, JULY 17th

  • 9:00 AM – 12:00 PM — Panel Presentations

This is our planned agenda assuming presenters whose presentations were accepted confirm their participation. Due to spacing limitations, only registered attendees will be permitted in the sessions.

Fragile X Syndrome Across the Lifespan

Presented by Fragile X experts, medical providers, caregivers, parents, and self-advocates on the topics of medications, education, and development and behavior for young children, adults, and females with Fragile X syndrome.

Tracks include: Children, Adults, Development and Behavior, Education, Females, Medications & Trials

Children with Fragile X Syndrome
Experiential Workshop: Deepen Empathy Related to Hyperarousal in FXS
Using Visuals to Support Daily Function
Improving Sleep in Children and Youth with FXS
FORWARD

Adults with Fragile X Syndrome
Common Behaviors and Available Treatments Across the Lifespan
Transitioning to Independence in Adulthood: What helps? What hurts?
What is Happening: Emotional and Behavioral Changes in Adolescence and Youth Adulthood
Panel – Daily Life

Development & Behavior
Encouraging Early Communication
Emotion Dysregulation in FXS
Positive Family Intervention: Strategies to Address Challenging Behaviors in Children with FXS
Strategies to Improve Executive Functioning Skills
Navigating the Challenges of Puberty and Adolescence for Youth with FXS
How Many Times Is He Going to Ask That? Perseverative Questioning
Setting the Stage for Success: Effective Strategies to Promote and Support Social Skills

Education
Promoting Inclusive Early Childhood Environments for Young Children with FXS
Assistive Technology: Tackling the Trends and the Tried and True
Panel – Education

Medications/Clinical Trials
Starting and Monitoring Medications in Fragile X
Medications for Fragile X: Anxiety, Irritable Behaviors, Aggression
Interpreting Clinical Trial Headlines and Announcements in FXS

Premutation

Premutation Carrier Concerns, Fragile X-associated tremor/ataxia syndrome, and Fragile X-associated primary ovarian insufficiency.

Premutation carrier concerns, FXPOI, FXTAS, and other emerging topics

Diagnosis and Treatment of FXTAS
Premutation Carrier Issues and International Fragile X Premutation Registry
Panel – Fragile X-associated tremor/ataxia syndrome (FXTAS)
Panel – Premutation Q&A

Panels

A chance to hear from the experts on a variety of topics, including time for Q&A

Panel discussions with medical professionals as well as parent experiences

Clinical Trials in Fragile X Syndrome Q&A
Education
Siblings & Self Advocates
Fragile X tremor/ataxia syndrome (FXTAS)
Research Landscape
Dads Helping Dads
Females with Fragile X syndrome
Premutation Q&A
Adult Daily Life
Behavior
Medications

Research

Top researchers on the hottest research topics in Fragile X, including recently completed and ongoing studies.

Basic Science – Fragile X Syndrome
Clinical Science – Fragile X Syndrome
Basic Science – Premutation Carriers
Clinical Science – Premutation Carriers
CCHMC Symposium
FORWARD

Siblings & Self-Advocates

A track designed specifically for siblings and self-advocates to share experiences and connect with one another

VIP Pilates
Stay Calm and Regulate
Movement and Relaxation
Self-Advocates Panel
Self-Advocates and Siblings Dance

Registration — Early Bird Rates

The following prices include access to the Kickoff Reception (July 14, 5:30–7pm), all sessions (July 15–16), the Outdoor California Casual Farewell Party (July 16), and attendee premiums. For information on age restrictions and other important details, please visit our registration page using the button below.

  • 1 Family (2 members) — $800
  • 1 Professional — $500
  • 1 Individual — $425
  • 1 Self Advocate — $375
  • 1 Sibling — $375

We also have: Single-day tickets ($275 for either Friday or Saturday) and additional Outdoor California Casual Farewell Party tickets available ($75).

Full-time college and university students: You may request a discount promotion code. Using your school student email address, please email a copy of your current dated student ID and proof of full-time registration to conference@fragilex.org.

LEARN MORE AND REGISTER

Hotel Details

The venue is now open for reservations. You can also use the booking link to manage an existing reservation.

Town and Country San Diego
500 Hotel Circle North
San Diego, CA 92108
1-800-772-8527

Please do not reserve more rooms than you anticipate needing. The negotiated room rate is available until the room block is sold out, or Monday, June 20, 2022, whichever comes first.

One night’s deposit will be charged to your credit card at the time of reservation. The deposit is fully refundable up to 48 hours — by 6pm— in advance of your arrival.

The resort has recently undergone a renovation and we’ve booked the entire conference center.

Cost Information: Pricing valid for July 11–17, 2022

  • Rooms: $199.00 per night + 12.5% in taxes/fees
  • Deposit: A one-night deposit is required.
  • Children under 18: No additional charge for children 18 and under staying in their parent’s room.
  • Parking: $10.00 per night

Cancellations:

  • Please don’t reserve more rooms than you need.
  • Reservations can be cancelled up to 48 hours prior (by 6pm).

Also see:

BOOK ONLINE

Child Care

Thanks to our generous supporters, we are excited to announce that the child care rates are subsidized 50% of the actual costs.

KiddieCorp, a licensed, professional child-care service provider will once again be available for an additional fee Thursday, July 14, through Sunday, July 17, for children ages 2 to 12.

Registration deadline is May 18, 2022. 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.

Also see the KiddieCorp Parent’s Guide↗ for their current health and safety measures.

LEARN MORE AND REGISTER

Exhibitor Information

Are you interested in having an exhibit booth at the conference? As an exhibitor, you will have two days to showcase your staff, services, and research
opportunities. You’ll will reach nearly 1,000 parents, researchers, professionals, and advocates in attendance, plus an additional 200+ virtual attendees from 50+ countries around the world.

EXHIBITOR INFO AND SIGN-UP

Conference FAQs

The NFXF is committed to keeping our conference attendees safe during their time at the conference by adhering to all local and state guidelines. 

  • All attendees will be able to self-identify their social distancing comfort levels with a red, yellow, or green indicator on their name badges. 
  • Every effort will be made to maximize distances between seats during general and breakout sessions. 
  • Food and beverage events (Kickoff Reception on Thursday, Farewell Party on Saturday) will be held in outdoor spaces to allow for maximum enjoyment and comfort. 
  • While masks are currently optional, all attendees are encouraged to wear them if they prefer. 
  • We are closely monitoring the mandates regarding COVID-19 and will update our safety practices as needed. 

Please see the Town and Country hotel health and wellness commitment for more details. 

The NFXF is currently planning for an in-person conference.

Should it become necessary for registered attendees to cancel, requests must be made by sending an email to conference@fragilex.org on or before May 27, 2022. Cancellation requests will be subject to a $50/person administration fee. All refunds, less the $50 per person administration fee, will be processed within 30 days after the cancellation request is confirmed.

After May 27, 2022, we regret that no refunds are possible. However, attendees may transfer an in-person paid registration to another attendee at no charge.

In the event COVID-19 mandates change and prevent us from holding our in-person event, we will host the event virtually. All previously registered attendees will automatically have their in-person paid registration applied to the virtual event. 

The NFXF is adhering to all local and state COVID-19 health and wellness guidelines. Please use care when booking travel arrangements. The NFXF is not responsible for airfare or other travel reimbursements should public health guidelines require cancellation of the in-person conference. 

Also see COVID-19 information from the CDC↗.

Five Reasons to Stay at the Town and Country San Diego:

  1. Negotiated pricing. We negotiate the best possible room rate by contracting for a block of rooms at the conference hotel. Typical room rates would be significantly higher at the same hotel without this advantage.
  2. Extend your stay. The special rate is available before and after the conference dates. The room block is available from July 11-July 18, 2022, allowing you to make a special vacation out of the conference at a significant savings.
  3. The hotel staff is briefed on Fragile X. They are prepared on how to best support the needs of families. 
  4. Network with other attendees. Including professionals, caregivers, parents, and self-advocates.  
  5. It’s easy and convenient. No worrying about getting to sessions on time, taking a quick break between sessions, or looking for a parking space.

YES!! This is a family friendly event. Non-registered family members are welcome to join the Kickoff Reception on Thursday, July 14, 2022, and enjoy the hotel amenities and the many iconic San Diego attractions. However, due to space limitations and our commitment to the health and safety of all registered attendees, ONLY registered attendees (including children and adults) are permitted in the conference space and sessions.  

Yes! Additional tickets can be purchased for individuals who are not registered attendees. 

ONLY registered attendees are permitted in the conference space and sessions, due to space limitations and our commitment to the health and safety of all attendees. We strongly recommend that children ages 2–12 be enrolled in childcare with KiddieCorp. 

The Thursday’s Kickoff Reception, access to all conference sessions, Saturday’s Farewell Party (an outdoor California-casual event), and attendee premiums. Not to mention the priceless experience to meet other families, self-advocates, and professionals. This is a can’t miss event! 

Sessions are not monitored, and it is the responsibility of the registered parent, legal guardian, or caregiver to provide support in the self-advocate sessions. Self-advocates 18 and older who wish to attend sessions alone must be independent, as these sessions are not monitored regarding the comings and goings of participants.

Many of the iconic local attractions, shows, and exhibits can be found at San Diego City Pass↗ and Visit California↗.

Also learn more about the Town and Country amenities and surrounding area↗.

We are planning for an in-person event and are exploring the virtual experience option. Be sure to sign up to receive conference updates to keep up with the latest news!

For families who reside in California, the NFXF has been approved as a Vendor with the San Diego Regional Center↗. Families that live in the San Diego Regional Center service area may contact their service coordinator directly to inquire about funding support to attend the 18th NFXF International Fragile X Conference. For those families who are not receiving services from this Regional Center, contact your local Regional Center to inquire about a “courtesy vendorization.”

2022 Scholarship Opportunities

The scholarship application deadline has passed. Scholarships are made available thanks to our Community Support Network chapters and community partners, supporters, and private donors to assist individuals, families, self-advocates, or siblings who have not previously attended an NFXF International Fragile X Conference.

Please note: This scholarship deadline has passed.

Reduced Registration Conference Scholarship

Includes a reduced conference early bird registration fee. Priority is given to first-time NFXF International Conference attendees. Other applicants will be considered as funding permits. (Note: This scholarship does not include funding for travel or accommodation expenses).

Please note: This scholarship deadline has passed.

This scholarship is offered in memory of Shannon Adamson, a young woman living with Fragile X known to her friends as a friendly, outgoing person. Like many other self-advocates, she enjoyed being able to spend time and reconnect with friends at the conference and learning new things about Fragile X at the self-advocate sessions. Her sudden passing after the 2016 International Fragile X Conference inspired the “Shannon’s Wonder Women Scholarship,” which aims to help other young women living with Fragile X syndrome realize their maximum life potential. 

Please note: This scholarship deadline has passed.

The Arthur S. Mintz Memorial Conference Scholarship was established in memory of a kind-hearted, thoughtful man who befriended a young man in his community who has Fragile X Syndrome just because he thought it might be helpful to the family and good for the young man. 

Arthur “Artie” Mintz was the type of person who, when presented with a problem by his friends, would try to help them. He even went so far as to help a young woman whose family he knew seize an opportunity to attend Julliard when her family could not afford it. Artie also volunteered his time at a school for “at risk” girls during his frequent trips to Israel for his work with school administration. Artie was truly a selfless man and would never take credit nor brag about his good deeds.  Many stories became public knowledge only after Artie’s passing in early 2017, though one was known by most — his relationship with the young man with Fragile X syndrome. 

For 4 ½ years, they spent most Friday’s together after school hours doing whatever the young man wanted to do and, occasionally, something Artie wanted to introduce to the young man’s life.  This relationship developed into something very special for both men but the success stems from Artie’s thirst for knowledge about Fragile X Syndrome.  He asked the family many questions and did his own research.  He began to speak with his many friends in the off chance someone might have additional information which would be helpful to his understanding and/or the family.  In large part, that is why so many in his life knew about the relationship.  Everyone involved recognize Artie’s efforts made a tremendous difference and had a positive impact.     

It is because of this and because those who have been touched by him, wish everyone were fortunate enough to have an Artie Mintz in their life that this scholarship was created.  The Arthur S. Mintz Memorial Conference Scholarship covers the registration and hotel cost of attending the biannual NFXF International Conference Scholarship.  It will be awarded to families and/or self-advocates who are first time attendees and who, without this scholarship, would be unable to attend.  The conference provides the opportunity to better understand Fragile X Syndrome and related disorders, learn what is happening in research, connect with the greater Fragile X community and make some new friends.  Just like a friendship with Artie, the conference has a positive impact on and makes a difference in the lives of those living with Fragile X. 

A Look Back at the 17th International Fragile X Conference

MAY 29–30, JUNE 27, JULY 22, 2020 | VIRTUAL

Our 2020 conference was our first virtual conference due to COVID-19. It was a difficult time as we all know, but it turned out to be one of our most successful conferences ever. As always, the top experts in the field of Fragile X delivered all the latest news and research.

Click the button below to get on-demand access to 19 of the 2020 conference sessions from our last conference in 2020. Or, check out the 2020 itinerary to get a look at the depth and breadth of our conferences.

2020 FRAGILE X CONFERENCE VIDEOS
2022 Conference Logo

   REGISTER

Early Bird registration is now open! Click below to learn more and register.

REGISTER

   HOTEL BOOKING

Book or modify your Town and Country Resort, San Diego, reservation.

BOOK ONLINE

   QUESTIONS?

Let us know how we can help. You can also sign up to receive updates.

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   MEET OUR 2022 SPONSORS

Thank you to our sponsors to date!
Interested in learning about sponsorship opportunities? Email Kristin at kristin@fragilex.org before May 15th)

Zynerba Pharmaceuticals conference sponsor logo display
Tetra Therapeutics 17th NFXF International Fragile X Conference sponsor logo
International Fragile X Premutation Registry
Asuragen
Healx Therapeutics 18th NFXF International Fragile X Conference sponsor logo
Fragile X Association of Southern California
NFXF Heartland Chapter
NFXF Northern CA Chapter
NFXF Southeast PA Chapter
Green Tree Jewelry
NFXF Houston Chapter
Fragile X Resource Center of Missouri
NFXF Greater NYC Chapter
NFXF Minnesota Chapter
Tech Data
Fragile X Association of New York
Fragile X Association of Georgia
Laughing Glass Cocktails

Archived Conference Information

17th International Fragile X Conference (2020)

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