Friday, July 8, 2011

Do you know about FXS?

9 comments
Having a child with FXS, it's painfully eye-opening how many people just have not even heard of Fragile X, let alone know anything about it.  Fragile X Awareness Day is this month, so I decided I'd be doing a few posts to educate those that may not know anything about it.   I'll start with just a few simple facts today, but I want to challenge each person that reads this to share the link with at least one other person who has not heard of Fragile X and to comment below when you do.  ((Make sure you read all the way to the bottom so you don't miss out on the giveaway!))

Did you know?......
  • Fragile X is the number one cause of inherited mental impairment.
  • Fragile X is the most common known cause of autism or autistic like behaviors.  The Fragile X gene is the cause for autism in 2%-6% of all children diagnosed.
  • There is no cure for FXS, those that are affected can take medication to help with the side effects but will live with it for their entire life.
  • Fragile X is caused by just one gene.  This gene, FMR1, shuts down and fails to produce a vital protein.
  • Fragile X affects 1 in 4000 males and 1 in 6000 females of all races and ethnic groups (source CDC). About 1 in 259 women carry fragile X and could pass it to their children. About 1 in 800 men carry fragile X; their daughters will also be carriers.
My goal this month is to spread awareness.  Can you help?

If I receive at least 25 comments by July 22 (the comments must be 25 different people), I will be randomly drawing from the comments listed for you and the person you shared the link with to each receive two dozen homemade cookies or brownies delivered directly to your door.**  That means for each friend you share the link with, you have a better chance to win some yummies!  For those out of state, fear not - for I will pack up the yummies and send them to you by mail.  Unfortunately, you do have to live in the continental US to win. though.  Both you and the person you shared the link with must comment in order to win - make sure your friend states in their comment who shared the link with them!     After some input from people reading this, I've decided to get rid of the stipulation that both people must comment to enter the contest.  If we reach 25 comments, I will pick a random winner from the comment.  If the random winner was sent here by someone else and mentions that person's name, I will giveaway a box of yummies to each.  **edited July 11 7:30 AM EST**

Please also take a couple seconds to "attend" the National Fragile X Awareness Day event on Facebook.  The event is located HERE

**I will also be willing to do a cake or a dozen cupcakes in places of the cookies/brownies should the winner choose, but for those that would need the goodies mailed, they would have to remain unfrosted**

9 comments:

  1. Such a cool idea, Courtney. I'll be sharing with all my friends and family!! (Even though I can't win any of your yummy cookies). :P

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  2. I have some more ideas about how to make a difference for someone living in a Fragile X world. http://fragilexworld.tumblr.com/

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  3. Great post Cort, thanks for sharing.

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  4. What a cool idea. Thank you Holly Roos for sharing!

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  5. Such a wonderful way to bring awareness to our wonderful world of FX. Big thanks to you and Holly Roos for sending me this way to your wonderful idea!

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  6. Cort I'm so glad that you have started this blog and have so much information. I had never heard of FXS before, thank you for sharing with us!

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  7. Thanks for writing such an informative post!

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  8. I learn something new every day and I am grateful I found your blog. I have known your husband for quite a few years and have been thinking about your family and praying for you all :) Thanks for the educational information!!

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