Researchers at the University of Alberta's Department of Pediatrics and Stollery Hospital are completing a study looking at memory in children with a neurodevelopmental disorder or typical development.
The NFXF Summer Student Fellowship was established to encourage a new generation of Fragile X researchers. By funding young scientists’ research pursuits, we believe that it will continue to push Fragile X into exciting new territory and inspire them to continue important work in this field.
We are incredibly proud of the swift action taken by members of our community, after discovering offensive items for sale on a few major retailers' websites. We stand with you.
Closely following its passage (392-26 on Nov. 30) in the House of Representatives, the U.S. Senate took up the 21st Century Cures Act and enacted the law by an equally impressive margin (94-5) vote. The law’s next stop is President Obama’s desk, and the President has already made clear his support for the bill and his intent to sign it. Passage will mean nearly $5 billion of new funding for the National Institutes of Health (NIH) and $500 million for the Food and Drug Administration (FDA), along with a plethora of policy provisions that will bolster medical research.
On Saturday, October 29th, Fragile X of Central Arkansas hosted renowned speakers and therapists, Tracy Stackhouse and Sarah "Mouse" Scharfenaker for an educational conference, open to all families.
Therapy is a fun, creative process – one of the reasons that we have been at this for so long! One of the challenges of being a therapist is staying on-top of the ever-emerging intervention techniques that come into practice. Not only is it important to know the best strategies available, but it is important to carefully analyze each technique for its utility and efficacy. As most strategies are typically devised or targeted at a population other than those with Fragile X syndrome (FXS), we have taken it upon ourselves to always analyze the strategies in light the FXS learning style. Most often we find it necessary to modify even the most researched interventions to work for individuals with FXS.
Make no mistake, due to the rules associated with our tax-exempt 501(c)3 status, which prohibit the NFXF from directly or indirectly participating in, or intervening in, any political campaign on behalf of (or in »
Jacqueline Del Fierro, a PhD clinical doctoral student at Walden University (under the advisory of Dr. Jesus Tanguma), is conducting a study about parent’s stress and marital satisfaction experience with children with Fragile X syndrome (FXS), due to their shared child care responsibilities.
Like many of you, I will always remember the day and time when I received the diagnosis of our son, Ian. Fragile X syndrome – never heard of it. We had the good fortune of being able to meet with Dr. Randi Hagerman and Amy Cronister, a genetic counselor, the week after we received our diagnosis. I also remember meeting Mouse and Tracy. They were all working in Denver at the time. My take-away from that initial appointment was I realized this was a big deal, and it was not going to go away. In hindsight, I had no idea about the magnitude of the people I was meeting. My head was spinning.