Blog

From One Caretaker to Another

Being the caretaker of someone with special needs, such as Fragile X syndrome, can be daunting. Isabel looks back at her journey, sharing advice and encouragement for new caregivers or those who have been doing it for years.

Isabel Grant-Funck headshot

COVID-19 Check-In: Month 5

What can we do to take care of ourselves and to help others? A mother takes a step back to imagine what life during a pandemic looks like through the eyes of her son, who has Fragile X syndrome.

Soda bottle

The Marner Family Hosts a Golf Outing in Support of NFXF

The Marners held a golf outing in western Illinois to raise support for the NFXF. “We love being able to help in any way we can and this is something Reid also had so much fun with!”

Marner children out on the golf course during fundraiser for Fragile X

Sophia James: Life as a Sibling of Someone with Fragile X Syndrome

Sophia James, a top 10 finalist in the latest season of American Idol, talks about being a sibling of her brother James, who has Fragile X syndrome. You can view the video or read the transcript below. There is so much in what she says — take the time to watch/read it. It’s well worth your time.

Sophia James during her keynote address May 29, 2020

Shining a Light on NFXF’s Global Impact

In 2019, Dr. Tabatadze and her colleagues ─ a small team of doctors ─ established the first local Fragile X laboratory in Georgia. They conducted a pilot study and tested 250 patients with autism spectrum disorder (ASD) and intellectual disabilities; the study yielded 11 positive results for Fragile X.

Map of Fragile X clinic locations worldwide.

Getting Comfortable Wearing a Mask

Real-life tips from a mom, Jayne Dixon Weber, who’s already going through this with her own son, plus a a quick video from
Rebecca Shaffer to guide you through the process of getting your child comfortable wearing a mask.

Ian out on his front porch wearing his favorite face mask

Externally-Led Patient-Focused Drug Development Meeting for Fragile X Syndrome

NFXF has secured an externally-led Patient-Focused Drug Development (PFDD) meeting, conducted through the FDA, for Fragile X syndrome. The meeting is scheduled for March 3, 2021.

Young boy yelling into microphone

Study: Join the FORWARD Registry & Database

The FORWARD Registry is open to individuals with any type of Fragile X disorder, and the FORWARD Database is open to individuals with a full mutation (including mocaicism).

FORWARD logo held in the hands of a child and parent

2020 Fragile X Awareness Packets

July is National Fragile X Awareness Month. To help you raise awareness we pulled together some materials that are free to download and use: posters, Zoom backgrounds, coloring sheets, flyer, and “Know Me” cards.

2020 Awareness packet contents

Zynerba Announces Results from CBD Gel Clinical Trial

“These top-line data show promise for Zygel in some individuals with Fragile X syndrome. We look forward to seeing the next steps taken by Zynerba, and continue to be thankful for their thoughtful partnership and dedication to bettering the lives of those living Fragile X.” —Linda Sorensen, NFXF Executive Director

cbd gel pouring onto hand

Tell Us About Someone Xtraordinary In Your Life

Tell us about someone Xtraordinary in your life related to Fragile X. Submit your nominee and and we’ll let them know plus we’ll use it to help spread awareness about Fragile X.

Circle of pictures of Fragile X caregivers, doctors, teachers, friends, siblings, therapists

PIXI Study: Parent-Infant Fragile X Intervention

RTI International and the University of North Carolina at Chapel Hill are conducting an early intervention study to learn about the best ways to support early development in infants identified with the full mutation of Fragile X. Babies 0–9 months old with the full mutation, and their caregivers, may be eligible to participate.

Newborn wrapped in cloud of white blankets