The NFXF Blog
University of Alberta: Memory Study in Children/Youth
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.
Message from NFXF President: It’s an Honor
Dear Fragile X Community, Sharing my family’s Fragile X story with you through the NFXF Annual Appeal was truly an honor. If you haven’t already, I hope you’ll take a moment to read through it and [...]
Summer Student Fellowship: 2016 Summaries
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.
NFXF Webinar: Being Prepared for Adulthood
Dr. Yankowitz discusses the adult transitions you want to start planning well before your child ages out of services. Dr. Yankowitz has more than 30 years experience working with families of individuals with developmental disabilities.
Merchandise Being Sold with Offensive “R-Word” Language
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.
21st Century Cures Act Demonstrates Bi-Partisan Spirit
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.
We Rock The Spectrum Family Day
[mpc_image preset="preset_2" image="26090" margin_divider="true" margin_css="margin-bottom:15px;" image_size="700_thumb" image_opacity="100" effect="none" image_hover_opacity="100" mpc_ribbon__disable="true" animation_in_type="transition.expandIn" animation_in_offset="100" animation_in_duration="1200" animation_in_delay="600"]On Sunday, December 4 the Fragile X Resource Center of Missouri hosted an afternoon full of ziplining, bouncing, painting, swinging and dressing up [...]
Double Your Giving. Increase Your Impact.
[mpc_image preset="preset_2" image="25446" margin_divider="true" margin_css="margin-bottom:15px;" image_size="700_thumb" image_opacity="100" effect="none" image_hover_opacity="100" mpc_ribbon__disable="true" animation_in_type="transition.expandIn" animation_in_offset="100" animation_in_duration="1200" animation_in_delay="600"]Our annual year-end appeal is underway, and we’re grateful for the generous support during our most important campaign of the year! Your [...]
Fragile X and Hyperarousal Educational Conference
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.
Annual Appeal
[mpc_callout title_font_size="0" title_font_line_height="1" title_font_transform="uppercase" title_font_align="center" content_width="75" content_font_color="#ffffff" content_font_size="16" content_font_line_height="1.4" content_font_transform="none" content_font_align="center" content_margin_divider="true" content_margin_css="margin-top:0px;margin-right:0px;margin-bottom:20px;margin-left:0px;" icon_align="left" icon_type="image" icon_image_size="medium" icon_image="25472" icon_padding_divider="true" icon_padding_css="padding-right:0px;" icon_margin_divider="true" icon_margin_css="margin-right:0px;margin-left:0px;" padding_divider="true" padding_css="padding-top:0px;padding-right:0px;padding-bottom:0px;padding-left:0px;" mpc_button__preset="preset_2" mpc_button__url="url:%23modal_id_582b814b68777|title:Contribute%20to%20the%20Annual%20Appeal||" mpc_button__font_preset="mpc_preset_20" mpc_button__font_color="#ffffff" mpc_button__font_size="16" mpc_button__font_transform="uppercase" mpc_button__font_align="center" mpc_button__title="Support the NFXF" mpc_button__icon="fa fa-chevron-right" [...]
Video Modeling
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 our practice and making them work for individuals with FXS.
You Are Never Too Old to Wear a Pink Tutu . . . and Other Lessons Our Son Has Taught Our Family
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. These are the lessons my family has learned since that time.