Tuesday, October 1, 2013

Rett Awareness Month

Today marks the beginning of Rett Syndrome Awareness Month. It is our first. One of the new milestone in our lives. Until this year, the month of October was reserved for breast cancer awareness (for me at least I know many groups use October for awareness) and pink everything. I would go to Panera's several times during the month for a deliciously sweet cherry pink ribbon bagel and maybe go on one of the many charity walks. I had no real connection to breast cancer outside of the fact that I am a woman, which honestly is enough, but this year it is different. VERY different. I now have a cause to truly rally around. Something so close to my heart that it has become a part of me body and soul. I can only imagine this is how others with a cause feel. But calling it a cause isn't really enough. It is more like a quest. A quest that will only end when a cure is found.

Here's some quick facts about Rett Syndrome from GP2C:

  • Debilitating neurological (movement) disorder that predominantly affects females.
  • Baby girls are born "normal" but begin to lose acquired skills between the ages of 1-3 years old. 
  • Caused by a single gene mutation that leads to underproduction of an important brain protein.
  • The most severe form of autism.
  • The leading genetic cause of severe impairment in girls - most cannot speak, walk or use their hands.
  • Despite their physical disabilities, girls with Rett Syndrome are believed to be functioning mentally at a much higher level than previously thought.
  • As prevalent as Cystic Fibrosis, ALS and Huntington's.
  • Another little girl is born with Rett Syndrome every 90 minutes.
  • Rett Syndrome is a potentially REVERSIBLE disorder. Research has proven once protein levels are back to normal levels, symptoms subside.
There is hope! Researchers are diligently working towards finding a cure for Rett Syndrome and believe their work will further research for other syndromes and diseases like Autism, bipolar disorder, and Alzheimer's (to name a few). You can help by supporting a Rett family (really any family with a special needs family member). Here's how...

Think small. Yes, you read that right...small. The BIG stuff can be intimidating, so just think of small things you, your family, your church, your school, your company (just about anyone or any organization) can do. Here are a few ideas from the 20 Simple Things List:
  • Simply smile and say hello. I love it when people smile at me and speak to Rae (especially kids)!
  • Help a family out by offering to assist them with yard work, cleaning their house, or making them dinner. These things often get tossed onto the back burner.
  • Invite a family with a special needs child to a function. Offer to help with the child so the parents can talk and enjoy their time. Many families do not get out much because it can be very difficult to manage all by themselves.
  • Plant a Garden of Hope: In exchange for a $1 donation you can sign your name on a beautiful flower. 
  • Dress Up 2 Cure: Who doesn't LOVE playing dress up??? Students can dress silly for one day and bring spare change to donate towards a cure for Rett Syndrome.
  • Rockin' for Rett: It's a fun time for all! Crank up the music featuring local bands, local businesses, and fun, Fun, FUN!
  • 31 Tweets/Posts for Rett Syndrome. Go to the GP2C blog for samples of tweets and postings to help spread awareness.
  • Hang a GP2C banner up. (to purchase click here
  • Rock a GP2C shirt! You'd be surprised how many people ask me about Rett when they see my shirt. (to look at merchandise and purchase click here)
Aunt J rocking her GP2C shirt at school!

Raising awareness is that easy!

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