Sunday, October 19, 2008

let's raise some funds!

This week is my own personal Fragile X Week! It's basically a series of GENE Days. Teachers at my mom's school are wearing jeans (get it?) on Tuesday for $5, the school I work at and its affilliates are wearing jeans for $5 on Wednesday, and my Aunt's school (students and teachers) are wearing them Thursday.And I am going to talk to the kids after their chapel service Thursday. Anything you think I should absolutely say? Hopefully we will be able to raise a substantial amount of money and raise awareness. I am sending home flyers with all the kids explaining to their parents why the teachers are wearing jeans and the basics of Fragile X. My friend Laura made a super-cool logo and I tried really hard to get it on my blog, but I just couldn't. So if you want to see it or you want to use it for your own event, e-mail me at fxfundraiser@gmail.com. Otherwise, here's the info, adapted from a the Top Ten list I found at Fragile What?.


FRAGILE X SYNDROME

1. It’s genetic. Many families have never heard of Fragile X and may not have a family history of learning problems.


2. About 1 in 260 women and 1 in 800 men are carriers.*

3. About 1 in 3600 boys and 1 in 4000 girls have Fragile X Syndrome.*

4. Fragile X Syndrome can affect anyone.

5. Fragile X Syndrome is a spectrum disorder, meaning symptoms may vary from mild learning and emotional problems to severe cognitive impairment (mental retardation) and autism.

6. Carriers of Fragile X can have problems with reproduction as early as their 20’s and problems with balance, coordination, and memory in their later years.

7. There are certain traits related to Fragile X Syndrome, but no child has all of them. Some of them include learning problems, a long face and big ears, Attention Deficit Hyperactivity Disorder (ADHD), anxiety, shyness, and speech delay.

8. When testing for Fragile X Syndrome (FXS), it is critical that the correct tests are ordered – the Fragile X DNA (Southern Blot) and Polymerase Chain Reaction (PCR) tests are recommended.

9. Kids with Fragile X are lovable and friendly.

10. Where to go for the most accurate and up-to-date information on Fragile X Syndrome:
http://www.fragilex.org/ (The National Fragile X Foundation)
http://www.fraxa.org/ Fragile X Research Foundation

*http://www.fragilex.org/html/prevalence.htm

4 comments:

Sarah said...

What a great idea! I've been thinking of doing some FX fundraising for the holidays...just not sure what to do yet.

Jennie said...

Great list, Supa-stah! Show me your picture!

Anonymous said...

you should add that if a child has been diagnosed with autism the parent should insist on a fragile x dna test if it hasn't been done already.

Punkin's Oma said...

My teacher friends are very excited about wearing jeans tomorrow. I've already received some money and the people may not even wear jeans!

The logo is cool.

Oma