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Yearly Archives: 2016

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21st Century Cures Act Demonstrates Bi-Partisan Spirit

By |2016-12-09T09:24:01-05:00Dec 9, 2016|Annoucements, Foundation|

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.

Annual Appeal

By |2016-11-16T10:51:52-05:00Nov 16, 2016|Annual Fund|

“IT’S BETTER TO KNOW THAN NOT KNOW,” BECAME OUR MOTTO WE LIVE BY. Greetings, When our son Justin was diagnosed with Fragile X syndrome at age 5, we knew we would »

Video Modeling

By |2017-08-18T14:01:24-04:00Nov 9, 2016|Coffee Talk with Mouse and Tracy, Treatment and Intervention|

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.

You Are Never Too Old to Wear a Pink Tutu…and Other Lessons Our Son Has Taught Our Family

By |2019-12-30T17:26:01-05:00Oct 26, 2016|Education|

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.

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