It’s Fragile X Awareness Month

Fragile X Awareness Month Information

The internet provides us with incredible opportunities to spread the message that it’s Fragile X Awareness Month. Let’s use it to good effect and pass on information to help others learn about Fragile X.

See the Fragile X Awareness Facebook Page for images that you can share.

The more that know about Fragile X, more children will be diagnosed, and get the treatment and support they need, to lead more fulfilled, happier lives. More adults with FXTAS and FXPOI will be helped.

I dread to think of what life would be like now, for my son and my family, if I hadn’t known. I shudder to think of what behavioral and medical problems he’d have and how unhappy he’d be. My own life, without treatment for my own carrier symptoms, doesn’t bear thinking about.

For the first 4 years of my son’s life, I didn’t know what was wrong with him, or me. It was a miserable, worrying time. We spent so much of our time at doctor’s offices, dealing with his ongoing or latest health problem. His development delays and behavioral issues were put down to ill health, allergies and ear infections.

I was diagnosed with post natal depression, when he was 9 months, but now I realize it was an extreme version of the anxiety I’d suffered throughout my life, combined with early menopause. My own Fragile X carrier symptoms.

My son was nearly 4 before the doctor’s agreed that there was a real problem. He’d reached the normal milestone but only just. He was my 3rd child and even as a baby it was obvious to me things weren’t right but I was a mum with anxiety so who’d believe me.

Finally he was referred to a pediatrician who told me that my son did have development delays, that he would never catch up and that we’d never know why. That was it. No talk of any testing, no talk of therapies. I doubt he’d even heard of Fragile X. I was devastated.I suppose I’d always thought there would be a solution.

Six months down the track I found another pediatrician who specialized in disabilities. He knew just enough about Fragile X to order the DNA test. When it came back positive, he referred me to another mother to find out more.

Nowadays it’s different. There are support and research organizations and some dedicated Fragile X clinics. There’s published information, online and in books.

Fragile X Guide for ParentsUnderstanding Fragile X Syndrome: A Guide for Families and Professionals

But, there are still many, even in the medical profession, who know little or nothing about Fragile X despite it being the most common known form of inherited intellectual disability.

Please join in Fragile X Awareness month and spread the word. You can find Awareness Month images to share on our Facebook Page

For information on spreading the message online please read How To Increase Awareness For A Cause  on my own blog.

Read Full Article here:

Site Updates Google Alerts Fragile X Syndrome

I have just added two Google Alerts Fragile X Syndrome lists to the bottom of the site pages. The first one is Google Alerts Fragile X News which searches Google for recent news that mentions Fragile X Syndrome. The second,  Google Alerts Fragile X Blogs, searches blogs with recent posts mentioning Fragile X Syndrome. If you click on the links above or the headings of the lists below you will be taken to the full results page. You can filter the news feed for results by country.

How To Create Your Own Google Alerts

If you would like to keep up with news related to Fragile X Syndrome you can create your own alerts which can be delivered to your email daily or added to a Feed reader. To create an alert:

Go to the Google Alerts Page and log in with your Google id email address.

  • Add the search query. “Fragile X Syndrome” including the quotation marks. You will then be able to see your results next to the form. If you just add “Fragile X” you may get more results but some of these may not be relevant. I choose to use “Fragile X”
  • Choose what you want to search from the choices of Everything, News, Blogs, Videos, Discussions, Books. For my own personal email alert I choose Everything. The results pane will update to show results for each of these options.
  • Choose how often you want the results delivered to your email: daily, weekly or as they happen. I choose the daily option.
  • Choose whether you want to be alerted on “Only the Best Results” or “All Results”. The search results pane will show you which links each option produces
  • Choose whether you want your results sent to you by email or to your Google RSS feed. If you want both options, create two separate alerts.

You can change your options anytime by logging into your Google Account and choosing Manage Your Alerts from the  Google Alerts Page.

I am keen on getting news about Fragile X Syndrome both for personal use and for this website and my Fragile X Syndrome Facebook Page and find these alerts really useful.

Mission to Lars

Mission to Lars’ is documentary film about Tom Spicer, a man affected by Fragile X Syndrome,  who goes on a journey from the UK to USA to meet his long time hero, Lars Ulrich of Metallica.
The film’s three goals are entertainment, awareness raising and fund raising with all profits going to the UK charity Mencap.
Tom is accompanied on the journey by the producer and inspiration behind the movie, his sister Kate, who says in her fascinating blog:

“If I had a penny for every time I’ve heard Tom say, “Wanna meet him Kate, wanna meet Lars”, I’d be able to pay for a new eardrum to replace the one he’s worn thin with his incessant pleading”

I can relate to this; my own son’s current obsession being Aussie Rules Football.

Tom’s brother Will is co-director and one of the movie’s camermen.

Here is the movie trailer:


Mission to Lars – Intro from spicerandmoore on Vimeo.

Mission To Lars will be screened at Picturehouse cinemas in the UK in June. I am looking forward to a DVD release.

You can read all about Tom, the journey and the lead up to and making of the movie on Kate Spicer’s the blog “Mission to Lars” and follow Mission to Lars on Facebook

New Fragile X DVD and Animation

The Fragile X Associaton of Australia have recently produced a DVD entitled “Understanding Fragile X ”  It is aimed at providing useful advice and information from health professionals and poignant insights from families living with Fragile X.

The DVD which has been uploaded to Vimeo can be viewed below:

 Understanding the Fragile X syndrome from Fragile X Association on Vimeo.

They have also produced an animation providing a simple and concise representation of the genetics of Fragile X.

Fragile X Awareness Month US & Australia

The National Fragile X Foundation  (NFXF) have produced this wonderful video to celebrate the 12th Annual US Fragile X Awareness Day

 

 

The NFXF invited families to share how those affected by fragile X-associated disorders are more than their diagnosis.

You can see all the submitted stories and images entitled “Tales of Self Determination” on the 2011 awareness section of their website. Every image included in the above video was taken from  “Tales of Self-Determination”