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 Disability Information - Fragile X

 

General Information

Education & Classroom Accommodations

Michigan Resources, Support Groups, Listservs & Websites

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 General Information

For more information, visit http://www.fragilex.org/home.htm.

 

Diagnosis and Management of Fragile X Syndrome

Fragile X-Related Disorder Difficult to Diagnose

Fragile X and Company: Finding the Right Diagnosis

 

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 Education & Classroom Accommodations

 

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 Michigan Resources, Support Groups, Listservs & Websites

Fragile X Association of Michigan (FXAM) Resource Group Meetings
The Fragile X Association of Michigan (FXAM), as a resource group of the National Fragile X Foundation (NFXF), joins with NFXF to enrich lives through educational and emotional support, promote public and professional awareness of FX Syndrome and advance research toward improved treatments and a cure for FX Syndrome. Call 1-313-381-2834, email fraxmich@hotlinemail.com, or visit us on the Web at www.fragilex.org/html/michigan.htm.

 

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 National Resources & Websites

The Fragile X Research Foundation: http://www.fraxa.org/

 

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 Articles Related to this Disability

The Top Ten Things You Should Know About Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)
 

One Day in the Storm of Life - I seldom focus on the negative but when life happens it’s not always positive. It was August 30, the first day of school for the girls, a time of celebration. We started preparing for this day two weeks ahead of time. I thought the morning would be smooth as silk but then the FX (Fragile X) fairy visited during the night.

 

Fragile What? - Although Fragile X Syndrome is the most common known cause of inherited cognitive impairment, the up-to-date name for mental retardation, the average person has not heard of Fragile X Syndrome.  The average health professional has very little knowledge, or dated knowledge, of Fragile X Syndrome.  Until our children were diagnosed, we were average people asking, “Fragile what?”

 

The Top Ten Things You Should Know About Fragile X Syndrome

 

Grief Can be a Gift - With the dog days of summer upon us, I was sitting at this silly computer trying to find the direction for a column. My mind wandered far from summer to a personal experience. It's a unique experience that only a parent of a child with a disability can understand: the grief that one experiences with a diagnosis of a disability.

 

X-tra Special Advice: Cooking for a Cause - Shortly after Andrew’s diagnosis, our free time began shifting focus. Slowly, it was spent less on leisure and more in the “special needs” world, such as writing this column. National Fragile X Research Day was celebrated on October 5. In honor of the day, there are many Fall Fling fundraisers being held all around the country with one thing in common – proceeds going to FRAXA Research Foundation to help find a cure for Fragile X Syndrome.

 

Fragile X: The Story of Luke - Shutdown of one gene changes a little boy's trip through life. When Luke Solotaroff was a month old, he still did not have the muscle strength to suck his mother's breast or a bottle. His parents had to use a tiny tube, one-tenth of an inch in diameter, to coax sustenance into his baby mouth. By the time Luke was 2 1/2 years old, the situation was no better. His legs were so flexible they could be tied behind his head. He was also developing distinctive features: large, protruding ears and an oval face. And while he laughed and screeched, he didn't form any words.
 

Discovering Fragile X Syndrome: Family experiences and perceptions; Human Touch: Jake Porter’s emotional story has gripped the Southern Ohio region.

 

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 Medical Information

The Fragile X Research Foundation: http://www.fraxa.org/

 

Existing Drug Reverses a Form of Mental Retardation in Mice - Scientists hope medication could treat learning disorders caused by autism. A drug already on the market for a completely unrelated condition could be used to treat a form of mental retardation linked to autism—if the results of a study in mice hold up, researchers report. Scientists used rapamycin—a medication doctors prescribe to patients who have had transplants to prevent their bodies from rejecting the new organs—to treat learning disorders associated with a disease called tuberous sclerosis complex (TSC) in mice.

 

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 Books & Videos

 

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 Personal Home Pages & Websites

 

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