Friday, July 22, 2011

Fragile X Awareness Day 2011

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Today is Fragile X Awareness Day 2011!  I hope that you have taken the time to read my posts over the past few weeks about Fragile X.  If not, you should do it now.  (hint hint)

I have a couple more things to add for those of you related to me on my father's side. (The Masters')
  1. It is in our family.
  2. There are 6 boys and 1 girl with the full mutation not to mention at least 11 carriers spread through 5 generations; though I expect that number is closer to 20.
  3. If your grandfather or grandmother was diagnosed with Parkinson’s there’s a chance that it is (or was) Fragile X Associated Tremor/Ataxia Syndrome or FXTAS and you should be tested.
  4. If someone in your family has been diagnosed with Fibromyalsia, there is a good chance it is also related to Fragile X and you should be tested.
  5. You and your children should be tested even if your kids don’t show any symptoms.
  6. You don’t want to wait until it shows up in your grandkids or great grandkids, it will rip your heart out.
Thank you Melissa, for letting me use some of your fantastic blog post

Now that you know a little more about Fragile X then you did before, today I want to share what you can do to help. 

Support research and government funding.  Researchers are learning new things about FXS and related disorders all the time, but as with every disorder those researchers need funds to help well, research.  Research that isn't a cure, but it can help our kids live better lives.  The great part about FXS research, is it's also helping scientists and doctors to learn more about other neuro-degenerative disorders such as Parkinson's, Alzheimer's, and Huntington's.  One of the things I think is particularly interesting is that this research has helped determine that one gene controls so many different things where before it was believed that one gene had one particular function.   If you feel compelled to support the FX research you can either donate, or just reach out to your congressman/woman or senator.  You can find out about exactly how you can help here:  NFXF Legislative Action Center

Support parents and caregivers.  Offering to watch the kids, calling to see how the parents are doing, asking if you can help, and really just listening are great things.  Most of us parents won't approach you with these things, it's a huge burden to bear and often times we just don't want to lay that on anyone else.

Learn more about Fragile X.  If you know an affected child, you more than likely know an affected parent as well and maybe even a grandparent.  The more you know, the more you can help, and the more support you can offer.  Check out the links on the side of my blog for more information as well as the About FXS and FX Associated Disorders sections of this blog.  Also visiting the different blogs in the Fragile X Webring (located in the side bar of my blog as well) may give you a good insight into FX Families' day to day lives.

Educate others.  Tell others about FXS, spend time with your own children teaching them how to be kind and accepting of kids who are different.  Each person

Don't be afraid to ask questions.   If you don't understand, ask.  Most parents are more than willing to answer any questions you may have and will not be offended or hurt.  I can guarantee that answering questions is much easier on us then being ignored or hearing ignorant comments.  Just remember to think before you speak, there is always a "nice" way to ask a question that isn't "Will your kid ever be normal".

Today is also a very special day for me besides being Fragile X Awareness Day.  Today is Mr Awesome and my 5th wedding anniversary and I couldn't leave this blog post without mentioning the event that started it all.   Without an us, there would be no Ayden.  I'm thankful every day to have this special man in my life and my two (soon to be three!) children.  He is the best father, friend, and husband I could have ever hoped for and I love him more each day.  I am so lucky and blessed to have him and my children in my life.  Love you, Crazy.


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