Our partners at the Centers for Disease Control and Prevention (CDC) released a new paper yesterday – timed to National Fragile X Awareness Day. Here are the key findings:

  • Only one in four children and young adults with FXS met the physical activity guidance from the United States Department of Health and Human Service (DHHS). DHHS recommends children 6–17 years of age get one hour of physical activity every day, while adults need about 2.5 hours per week.
  • Slightly more than half of the children and young adults with FXS met the CDC recommendation for an annual influenza vaccination.
  • Almost three out of four children and young adults with FXS met dental care guidance from the American Academy of Pediatric Dentistry (AAPD). The AAPD recommends children have their first dental exam at the time of their first tooth eruption, or by one year of age, followed by regular exams every 6 months for children and adults.
  • About nine out of ten children and young adults with FXS received the immunizations recommended by CDC between birth and 18 years of age.

The paper was published in the Disability and Health Journal and is based on a survey of parents and caregivers of children and young adults with Fragile X syndrome. It was part of the the Fragile X Online Registry with Accessible Research Database (FORWARD) project, which is funded by the CDC and administered by the National Fragile X Foundation.

This is the latest in a number of studies and papers based on the FORWARD data. Another one was just accepted for publication and several more are expected in the very near future. It is exciting to see the work that parents, children, doctors, and researchers have put into FORWARD yielding results and moving Fragile X research forward (pun intended). If you are a researcher interested in utilizing the FORWARD data or writing manuscripts, please reach out to Amie Milunovich, FORWARD National Coordinator, at amie@fragilex.org.

On a side note, this is also a great example of the pillars of what the National Fragile X Foundation does. The CDC and NIH funding comes from the hard work of NFXF Advocates, the FORWARD projects is part of our research efforts, and we are taking what we are learning and helping to educate and support families and medical providers.

In fact, the need for more physical activity and proper nutrition for individuals with Fragile X syndrome was the main purpose for the participation of Brennan Mejia teaches an exercise session at the NFXF ConferenceBrennan Mejia at the 16th NFXF International Fragile X Conference in July 2018. While it was fun to have Brennan (aka Red Power Ranger) attend, he taught three sessions for self-advocates on nutrition and exercise.

Read more from the CDC here and read the full paper on the NIH website here.