National Fragile X Awareness Day 2007 - the 5th Annual

Well, as if you didn't already know....I've lost it completely. I can't even keep track of the date anymore.

Yesterday, Sunday, July 22nd was National Fragile X Awareness Day. To me, everyday is FX Awareness Day, as I never stop trying to get the word out, and will tell anyone who will listen, what Fragile X is.

I have so many thoughts about things to do to raise awareness, I just get stuck in the execution of my plans.

I am thinking that we'll plan something in the Fall, something to mark a concerted effort to raise awareness as well as funds for the various components (NFXF, FRAXA, M.I.N.D.) that make up the world that give us, as parents, so much support to help us raise our children.

More to come....even some pictures of the boys...stay tuned for an update for the Discovery Channel show airing too (in August).

Enjoy the rain!
Paula

Fragile X Syndrome in the News - Chris Benoit tragedy

The National Fragile X Foundation shares in the sorrow surrounding the death of wrestler Chris Benoit and his wife and son. Early reports indicate that the son had fragile X syndrome, the world's leading cause of inherited intellectual disability, and that Mr. Benoit may have been depressed over that fact.

While the parents and professionals who make up the National Fragile X Foundation fully understand and appreciate the difficulties associated with raising a child with fragile X syndrome, we urge all citizens to learn more about the condition and about how, with the proper diagnosis and intervention, those boys and girls, men and women, can be active participants and contributing members of their families, schools and communities.

The U.S. Congress has designated July 22 as "National Fragile X Awareness Day." The National Fragile X Foundation uses this opportunity to help spread awareness about the condition as well as to educate professionals about the best forms of treatment and intervention. This year, on July 20, the National Fragile X Foundation has organized a three-hour, international audio/video webcast featuring many of the nation's leading fragile X syndrome clinicians. This free event is an excellent opportunity to learn about what can be done to provide the maximum opportunities for children affected by the syndrome.

Throughout the world, scientists, doctors, teachers, therapists and counselors are working hard to provide better forms of treatment and intervention. The National Fragile X Foundation has been organizing those professionals and disseminating information to the worldwide Fragile X community since 1984. Unfortunately, it sometimes takes a tragedy, such as that involving Chris Benoit and his family, to bring attention to so-called "rare" conditions. To learn more about fragile X syndrome please visit

Finally....others are seeing it!

So today I go to the dentist (my 2nd home since I had children) to have a filling repaired in hopes of avoiding a cap and possible root canal...I am so seriously wishing I could replace ALL my teeth with porcelain veneers and have ALL my teeth be twice their size, white and WITHOUT ISSUES! It would alleviate so many of the dental problems I've had, if only ALL of my teeth were fake!

So, I go in and sit and wait for my appointment. Half of my neighborhood works in this dentist's office, always a pleasure! ;-0

I see one of my neighbors (haven't seen her since surgery) who takes one look at my face and says "Oh my gosh...you look AMAZING!" I say, thanks, but you know...I'm still swollen, still healing...blah blah blah. She goes, "NO, seriously, you look AMAZING....completely different in your face!" WOW! That about made my day!

So, now...I start to think....Hmmmm, did I look that sad and pathetic before the surgery? Was the Bells Palsy as awful as I felt it to be? Makes me wonder. I feel too, like it looks great already, and yes, I'm still lumpy/swollen in the jaw, but the difference is starting to show. Who knows....maybe it's psychological? I feel better, so I look better?

Whatever it is, I wouldn't trade the feeling and the confidence it's given me for anything. I feel so incredibly blessed and grateful that I could even fathom having such surgery. I hope the angel looking over me never leaves my shoulder!

Onto a much less cosmetic issue...National Fragile X Awareness Day is coming up (July 22nd). Anthony and I are tinkering with some ideas as to how to raise significant funds and awareness. Any of you reading with with great fundraising ideas, please e-mail me some????? We did a letter writing campaign in 2005 and raised a little over $3K. I'd like to double that this year, or at least raise $5K. I have to get moving on that.

Matty and Ben are DONE (mentally) as is their Mommy with school! One more week to go! I cannot wait til it's over...not that the getting up early is going to stop, with both of them going to camp all summer, but at least the HOMEWORK stops! It's a more relaxed atmosphere here.

I feel like I missed last summer completely, with going back to work June 1 of 2006 and commuting 5 days a week in June and July, and 3 and 4 days a week in August. I plan to set up shop on my deck the days I telecommute and get out of this home office! No reason I can't work and enjoy my backyard simultaneously!

I want to take some pictures of the kids this weekend for Father's day and maybe a new one of my much less swollen face...and now that I recently had my hair cut..I can wear it down again!

P