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Monthly Archives: February 2017

Home/2017/February

Communications is the Key to Effective Advocacy

By |2017-02-24T12:02:22-05:00Feb 24, 2017|Advocacy, Foundation|

I am thrilled to be the newest member of the National Fragile X Foundation family. I have been impressed with the Foundation’s work for several years now, as my friends and former colleagues are active members. You, the FX community, possess the key to positive change in people’s lives and in Washington – energy and passion.

Passion for Community and Support Key to Success for Annual Conference

By |2017-02-22T09:00:20-05:00Feb 22, 2017|Central Connecticut, Community Support Network|

When Tammy and Andy Selinger received their daughter’s diagnosis in 1994, even their doctor was unsure what it meant. He just told them the test was positive for Fragile X. One of their first calls was to the National Fragile X Foundation, where they were connected to a long-time volunteer, Margaret Israel, who spent more than an hour and half on the phone with them. The support they found during such a critical time motivated them to get involved because as Andy says, “Nobody should get diagnosed without someone to talk to.”

Individualized Education Programs with Dr Vicki Sudhalter

By |2017-02-21T20:39:28-05:00Feb 21, 2017|Webinar|

The 'Individualized Education Program, also called the IEP, is a document that is developed for each public school child who needs special education. The IEP is created through a team effort, reviewed periodically. Learn how to best advocate for your child and work with her/his instructors to get the best education.

Understanding a Fragile X Intermediate Result

By |2020-05-18T10:16:08-04:00Feb 15, 2017|Genetics|

Fragile X DNA analysis is one of the most commonly ordered medical genetic tests. It is recommended as a standard part of the genetic work-up of children with developmental delay, autism or intellectual disability. Adult neurologists and reproductive specialists increasingly recommend Fragile X testing, as awareness has grown about Fragile X-associated Tremor Ataxia Syndrome (FXTAS) and Fragile X-associated Primary Ovarian Insufficiency (FXPOI). Fragile X carrier testing during pregnancy has also become relatively commonplace in the US and elsewhere, even for women without a family history suspicious for Fragile X disorders.

Critical Incident Management for Mothers of Children with Fragile X Syndrome

By |2017-02-09T16:47:06-05:00Feb 9, 2017|Carriers|

Dealing with critical incidents is very important for caregivers of individuals with Fragile X syndrome (FXS), particularly biological mothers. Unfortunately, critical incidents occur frequently for many caregivers of children with FXS. Behavioral outbursts and aggression are critical incidents that take place in the home or in the community. For biological mothers of children with FXS who carry the premutation gene, there is the added predisposition to anxiety, as well as other emotional concerns (Coleman & Riley, 2014), which can amplify their response to these critical incidents.

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