12 Important Resources for Families with Fragile X Syndrome

12 Fragile X Resources

Being a parent to a child with a disability, any disability, is like day after day of guiding your family’s boat through a constant storm.  For parents of a child with Fragile X Syndrome, a leading cause of autism and intellectual disabilities, the storm may seem to rage on and on.

To help you get though the tough times we have provided a list of 12 must have Fragile X resources.

Fragile  X on The Web

The National Fragile X Foundation

National Fragile X FoundationThe National Fragile X Foundation is active in Public Policy and Legislative Advocacy for individuals with Fragile X. In addition they run a national Fragile X Conference that attracts thousand of people. NFXF also provides resources for treatment and intervention for the Fragile X Community.

FRAXA Research Foundation

FRAXA Research FoundationFRAXA has provided over $21 million to help fund research for treatment and a cure of Fragile X syndrome.  Get information on clinical trials, new treatments, Freagile X news and nationwide events at FRAXA.org.

The Fragile X Registry

Fragile X RegistryBacked by the University of Wisconsin and the University of North Caolina, The Fragile X Registry’s is a database of people who want to be notified about fragile X research studies.In addition it provides information on research, news and treatment trials currently looking for children, adolescents and adults living with Fragile X.

Blogs about Fragile X

Fragile X BlogsLearn from parents that have journeyed down the Fragile X path before you. Check out these blogs from parents raising a child with Childhood Apraxia of Speech and join the conversation.

  1. Our Life…and a little bit of X
  2. The Other Lion
  3. The Fragile X Files
  4. Basically FX

Books about Fragile X

If you are looking for an offline way to learn about Fragile X there a number of great books for you to read. Here are a five books that will guide parents in working with their child.

Dear Megan: Letters on Life, Love and Fragile X 

by Mary Beth Busby and Megan Massey

Dear MegenMary Beth and Megan met when they both became active in the Fragile X Research Foundation (FRAXA). They wrote “Dear Megan” to offer hope and support to the millions of parents who care for and love their children with disabilities.

Written in the form of intimate letters between the two authors–who are separated in age by a generation–the book reveals the personal side of parents struggling with the challenges of school systems and health systems, marriage, and life to care for their disabled sons. It also shows the joy and love they find through these special children and adults.

Understanding Fragile X Syndrome: A Guide for Families and Professionals

by Isabel Fernandez Carvajal and David Aldridge

Understanding Fragile X SyndromeThis handbook offers a straightforward introduction that clearly explains the condition on both a scientific and practical level. With sections on diagnosis, symptoms and treatment, as well as discussions of various emotional and behavioral considerations, the book covers all aspects Fragile X syndrome, its implications, and the possibilities open to families affected by it.

The book demonstrates how with the right therapies progress can be made and emphasizes how music can be used effectively to promote communication, interaction, fine motor skills and responsiveness in children with the condition.

Fragile X Fragile Hope: Finding Joy In Parenting A Child with Special Needs

by Elizabeth Griffin

Fragile X Fragile HopeElizabeth Griffin’s son Zack has fragile X syndrome-the most common known cause of inherited mental impairment-and is among the 20 percent of people with fragile X who have autism. Whether you are a parent of a child with special needs or you struggle with unresolved grief, chronic stress, or depression, “Fragile X, Fragile Hope” shows without a doubt that you can survive, and more than survive, you can find your way back to a joy-filled life.

Fragile X on Social Media

Facebook: I Love Someone with Fragile X Syndrome

I Love Someone with Fragile XThis page is all about people who love someone with Fragile X Syndrome!  Parents and family members share thoughts, questions and suggestions for loving someone with Fragile X.  Also, connect with research and non-profit organization updates.

Fragile X on PinterestFragile X Boards on Pinterest

It’s all the rage in the social media circles, Check out these Fragile X boards that are full of pictures, inspirational quotes, ideas and more!

Robin

Written on 2012/08/14 by:

Robin

Robin Bennett has been a strong advocate of all individuals with disabilities since her own diagnosis at age 12 of Friedreich’s Ataxia left her dependent on a wheelchair for the rest of her life. Graduated in 2009 from Eastern Michigan University (EMU) with a Bachelor’s of Science in Creative Writing and Theater, Robin is currently pursuing her Master’s of Public Administration at EMU. She has worked and written for the Muscular Dystrophy Association, Ann Arbor Center for Independent Living and Integrated Living Solutions.. Robin enjoys laughing with friends, being a mentor to adults with developmental disabilities and proving that a book cannot be judged by its cover.
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  • Cortney

    Thanks for writing about Fragile X! We here so little about it, it’s awesome to see an article. :)

    I wanted to add there is a very large Fragile X group on Facebook as well for support. It’s listed as just “Fragile X”. There are a ton of very knowledgeable FX parents from all stages of life on there. The Fragile X Association of Michigan (FXAM) also has a Facebook page and is a great resource.

    http://fxsadayatatime.blogspot.com

  • http://www.facebook.com/sharri.lungarini Sharri Harpool Lungarini

    Robin, do you know about any resources about Dual Diagnosis of Autism and Fragile X?

    • Rachael

      Sharri, my middle daughter is unofficially diagnosed with Autism, we are still coming to terms with that. You can check up on Sister on my blog mentioned above “Our Life”

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  • Rachael

    Robin, thank you so much for your shout out to my blog. I really do hope to be able to advocate for Fragile X Syndrome. You are amazing for what you do here on your blog! :)

  • Matt Ross

    Great resource info! There is another resource in the Philadelphia area called The Elwyn Fragile X Center. Their website is: elwyngenerics.org/fragile_x_center.

  • 21foreveryoung

    I’m a adult woman with FX AND Duchennes m.d., Quest magazine gives me lots of informationr are there any other magazines anyone would recommend??

  • http://www.facebook.com/ediedykeman Edie Monroe Dykeman

    Robin, what great information. We are from the mid-Michigan area, my mother graduated from EMU and my daughter is currently working on her Master’s there. Also, my grandson has Fragile X syndrome so this information is of particular interest to me. Thanks!

  • Liz

    Thank you for the information. My older sister and myself both have Fragile X.