The NFXF Blog
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
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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
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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.
11th Annual Mouse Races with Fragile X Resource Center of Missouri
Flags were flying and the crowds were jumping as (contained) mice ran their races at the 11th Annual Mouse Races to Support the Fragile X Resource Center of Missouri.
Language Challenges and Language Possibilities for Fragile X Syndrome
Language is critical in much of daily life. Making friends, learning in school and holding down a job, all require language. For people with more limited language, like so many with Fragile X syndrome (FXS), researchers and clinicians are trying to figure out ways of improving language so that inclusion in more of life’s activities will be possible.
Western Mass Fragile X Wine Tasting Fundraiser
On October 2nd, Western Massachusetts Fragile X partnered with Four Season's and Esselon Cafe to hose a wine tasting event, benefitting Fragile X.
Ten Things to Do When Your Child Starts High School
You know your child best so you want to set up services that work for your child. This might look overwhelming, but if you take it one step at a time, you’ll do great!