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News for the fragile X community. Research, what findings mean for families, event highlights, and study announcements.


International Society on Early Intervention: OFXW Visits Australia!

In June, Our Fragile X World researchers Don Bailey, Melissa Raspa, and Anne Wheeler attended the International Society on Early Intervention conference in Sydney, Australia. Don presented about newborn screening for fragile X syndrome and other developmental disorders. Melissa and Anne presented about an early intervention program for infants with fragile X syndrome.

The International Society on Early Intervention

The International Society for Early Intervention (ISEI) is a professional society of over 3000 members from more than 100 countries. Every 2 or 3 years, ISEI hosts a conference for researchers and early intervention providers. “Early intervention” is a system of services for young children with developmental disabilities and their families. Early intervention may include speech therapy, physical therapy, and occupational therapy. This conference included people who are studying early intervention for children with autism, fetal alcohol syndrome, cerebral palsy, fragile X syndrome (FXS), and more.

OFXW Presentations

Don Bailey gave a talk on Early Check, our newborn screening project for FXS and other developmental disorders. Don’s presentation addressed questions such as:

  • Should FXS be identified through newborn screening even though babies with FXS do not need medical treatment right away?
  • Does it help children with FXS or their families to start early intervention before symptoms appear?
  • What data is needed before FXS could be added to newborn screening?

When answering these questions, Don talked about the importance of early intervention. Early intervention allows families and their children to get help that targets their specific needs. Typically, children with FXS are not diagnosed until they are 3 years old. So they often do not start early intervention until they are toddlers. Early Check allows parents to know about FXS shortly after birth. This allows babies with FXS to enroll in early intervention much sooner.

Melissa and Anne presented about a pilot early intervention program that is being tested on the babies with FXS. The program is called PIXI (Parents and Infants with Fragile X Syndrome Intervention). PIXI provides support for very young babies with FXS in addition to the help they receive through early intervention. PIXI focuses on teaching parents different ways to observe and interact with their baby. PIXI has been used to provide early intervention for babies with autism. However, we don’t yet know how much it will help babies with FXS and their families. The results of PIXI pilot will give researchers important information about whether very early intervention for FXS improves long-term outcomes. This will move the field closer to the possibility of newborn screening for FXS.

What We Learned

Don, Melissa, and Anne learned about a lot of new early intervention models that may be helpful for children with FXS. Some of these models need to be tested to show that they are effective before they are available to everyone. But our team was encouraged by the ways that researchers are improving early intervention for individuals with developmental disabilities. After the conference, Don, Melissa, and Anne met with leaders of the Fragile X Association of Australia to hear about what is happening in the fragile X community there.

Share Your Story

What experiences have you had with early intervention? How do you feel about the idea of identifying babies with FXS at birth? Please consider sharing your story with us. We hope to hear from you!

About the Author

Sara Andrews

Sara Andrews is a research analyst at RTI International in the Center for Newborn Screening, Ethics, and Disability Studies. Her research focuses on the perspectives of individuals with disabilities and their families.