Archive for November 16th, 2007

Advocacy Update

Well the veto did get overridden (boooo!!!) but it was a great effort.  Thanks everyone who pitched in.

Advocacy Update

Veto Override Fails-Back To the Drawing Board-After Thanksgiving

 

November 16, 2007

 

From:   NFXF Washington Team

 

To:       All NFXF Advocates

 

As he promised he would, the president vetoed the LHHS Appropriations bill on November 13th. Your overwhelming response to our Action Alert resulted in nearly 2,500 emails sent in just 24 hours to Members of Congress urging an override. Your letters were delivered to 82 of 100 Senate offices and 230 of 435 House offices-a remarkable achievement in such a short time. On November 15th at 11pm the House reconvened in an attempt to override the president’s veto. Appropriations Committee Chair David Obey (D-WI) set the stage and explained the consequences of failing to override the veto as follows: “For medical research at the National Institutes of Health, meeting the President halfway would put us $700 million below the bill we are considering today.  That means about 700 fewer grants for research to treat and cure so many deadly diseases.”

 

Despite the urging of NFXF Advocates and of nearly 1,100 organizations representing tens of millions Americans, the House came up a few votes short and the president’s veto stands. Before Congress recessed for the Thanksgiving holiday discussions had already begun exploring an attempt to compromise and meet the president half-way. Whether that’s possible and what that will mean to FX is yet to be determined. Stay tuned, don’t be discouraged and keep up the great work!

 

Better yet-Make plans now to join us for the next NFXF Advocacy Day February 26-27, 2008 in Washington, D.C. The only way Congress will truly understand how important FX is, is if we take the time to tell them, and there’s nothing like a face to face meeting to get your point across. More details on Advocacy Day to follow soon.

 

Nothing more will happen until after the Thanksgiving holiday. When we have news we’ll be in touch.

Have a great Thanksgiving.

Your NFXF Washington Team

“If this veto is not overridden, then the best that could happen is we wind up splitting the difference with the President’s wholly inadequate budget” David Obey (D-WI) in comments to  his House colleagues urging an  override of the President’s veto of the LHHS Appropriations bill. The override attempt failed.

Quick Links

Membership

DONATE ONLINE

2 comments November 16, 2007

Under Construction

FYI ~  I got mad at the changes they made to my theme so I’m working up a new design while I’m still lying here in bed drugged up.  So if you see a gazillion things changing before your eyes….it’s all good.  It’s just me being unsatisfied.

1 comment November 16, 2007

Matty’s Happy

Matt can’t verbally express his emotions all that well.  He is learning though.  When someone really ticks him off he stomps around the house telling everyone that he is “mad angry.”

happy2.gifBecause he doesn’t express how he feels very well, I never know much about how he feels about things.  One of the biggest worries I have had with Mat is if he likes his life now.  He absolutely hated Husband #2, and I felt so guilty for making him suffer through that man.  I had always hoped (dumbly) that he would come around.  Matt & Rachel’s response to Kevin was huge for me.  If my kids didn’t like the guy I was dating then I moved on. 

Well, this morning Matt made it apparent that he really likes it here.  Here was our conversation while we waited for the bus:

Rachel:     How many more minutes do I have before I can walk to school, Mom.

Mom:       A couple.

Rachel:     How many is a couple?milk.gif

Mom:       Two.  Ya know how people call Kevin and I a couple.

Rachel:    Yeah.

Mom:      Well, that is because a couple always mean two, like Kevin and I are two people who are married.

Matt:      And they are better than milk.

5 comments November 16, 2007


Autism & Fragile X

C’est Moi


Overly happy, married, working mom to 4 kiddos. This is our journey while working with fragile x syndrome.

Who are these people?!

all names changed to protect our family
  • Kevin ~ dad
  • Beth ~ mom & fragile X carrier
  • Lauren ~ 17 & in 12th grade
  • Austin ~ 14 & in 9th grade
  • Matthew ~ 13, in 7th grade, has full fragile x mutation, and autistic tendencies
  • Rachel ~ 10, in 5th grade, has full fragile x mutation, and autistic tendencies
  • Theresa~ Beth's best friend since 6th grade & her biggest supporter

wanna email me directly?

Be nice or I'll spam you ;-)

Click Here to Email

Fragile X Webring

Fragile X Webring
Previous | Home | Join | Random | Next

Check out Past Posts!

November 2007
S M T W T F S
« Oct   Dec »
 123
45678910
11121314151617
18192021222324
252627282930  

Wanna see every post I’ve ever written or start at the beginning…

Taggage

I've been encountered on

  • 98,171 occasions.

Family blogs

For more information:

People with a FXS link:

Watch videos at Vodpod and other videos from this collection.
r-word.org

what you've been saying

ME on OMG she has BMG!!
Cindy on Catch-22
fragilemom on WW: The Original Bus = Short…
fragilemom on My favorite season has ar…
Jana on Bye Bye FXSmom
Jennifer on Bye Bye FXSmom
Umma on Bye Bye FXSmom
Russ on Bye Bye FXSmom