For the second time in my life, I was fortunate enough to head to DC to speak to our Senators and Congressmen and women about Fragile X Syndrome. I know it's been forever since I've blogged, feel free to go check it out if you need a refresher! For Abe- it means he doesn't speak... not even a consonant. Cognitive impairment, sensory processing disorder, anxiety. oh the anxiety!!!!
165+ advocates from across the country traveled to DC to speak to their representatives about funding for bimolecular research- the CDC, NIH, and DOD. We have 'asks' that focus on continued streamlining of the monies spent on FX and Autism- a collective goal, collective funds. We are sooooo close to passing the ABLE act, so awesome to say that our congressmen and women have ALL signed as co-sponsors!
Pretty amazing group, huh?? And the self advocates... I don't think I can truly tell you what it means for me to hear some of these young men and women speak. In my momma's heart I wonder- is this what Abe thinks? What he feels? What he would say if he could find his voice??
Here's a group of us mommas with Nick- who has FX! He's amazing. When we all went out for dinner, the siblings and younger adults went one way while we headed the other- Nick ordered a chocolate martini. He said he'd always wanted one and had told his mom that he was going to get one in DC! He said he 'loved it!' but didn't think he'd order it again :-)
Here are Holly and I with Representative Greg Harper- our Fragile X Champion! Congressman Harper has a son with FX- who attends college at Mississippi State, pretty cool!
Our Fantastic Dr- EBK, a serious powerhouse in the FX world! It's always fun to attend AD with her...
Our 'ROLLLLLLEEERRRR COOOOOAAAASSSSTTTTER' shot on the underground senate tram... that little baby goes FAST, at least 5 mph ;-)
A pic with my representative Aaron Schock--- Love the Abraham Lincoln 'photo bomb' in the back!!! I love my Abraham sightings!!!
While we were in DC the students at Le Roy High School were doing there part here at home- Spread the word to end the word!! Did you take the pledge?!?
You go- you talk about your babies, you talk about your babies, all I wanted to do was get HOME to my babies!!
He didn't want to look at the camera, he just wanted to give me kisses- I'll take it! The reason I go, one of the reasons I'm so ready to come home!
Friends- could you pray for me please?
and I will pray for you.
xo
