I know that I’m jinxing myself royally here, but Matthew and Rachel are handling this break rather well. Matthew wants to take his backpack to his grandma’s house every day. I let him fill it up with stuff he wants to take and then he will have whatever he wants when he gets there. He isn’t too happy to get to grandma’s but he does get out of the van and doesn’t have a big meltdown. That is a definite improvement over years past.
Rachel is just wanting one-on-one time with everyone. She gets that with her dad but she doesn’t get it at my house. So yesterday she spent the day at one grandma’s house with 4 other girls and two boys. Today she opted for the grandma where there were no other girls or boys. I’m sure tomorrow she will be ready for that full-kid interaction again.
Austin & Lauren have adjusted just fine. They are up all night playing around and then sleep all day. Their cousins go back to Arizona tomorrow so they will begin their normal routines over the weekend.
I can’t believe a full week of break is already over. We have a touch over a week left. Time just goes by way too fast. I wish it had brakes.
December 27, 2007
I added a new page this morning. It is an excerpt from Clare Dunsford’s autobiography, Spelling Love with an X. It is long. It does come with pictures. It has a couple of links. It is remarkable and I hope you can find the time to read it throughly. You can click the link above that shows all my pages or you can click here.
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December 27, 2007
I thought some of you could be interested in the latest news.
Congratulations Advocates-President Signs 2008 Omnibus Budget Bill Which Includes ALL Fragile X Provisions Recommended by Congress
December 26, 2007
From: NFXF Washington Team
To: All NFXF Advocates
Dear Advocates:
Your hard work has paid off! Earlier today the president signed the 2008 budget which includes $1,860,000 for the CDC Fragile X Public Health Initiative – more than DOUBLE the current funding level of the program. In addition almost all of the directive language we requested to increase research funding and advance translational research and drug trials at the institutes of the NIH was also included in the bill.
This only came about because of your efforts to convince members of Congress that Fragile X is deserving of this attention.
Make no mistake, these incremental steps forward that we have been taking each year are accelerating the pace of research toward improved treatments and an ultimate cure, are increasing awareness of all FX conditions and are making services available to more families impacted by FX.
Just this week there was an exciting study published in the Journal Neuron. There has been significant attention that’s been focused on the story and we’ve included a brief sampling in the column to the right. In addition to the hope and promise of this exciting research, buried in the very last line of the journal article is something else that should make you all proud. This research is….”Supported by the NIMH [National Institute of Mental Health], NICHD [National Institute of Child Health and Human Development], The National Fragile X Foundation, FRAXA and the Simons Foundation.
While private foundation funding is critical to stimulate and advance research, the vast majority of funding for biomedical research comes from the government. The NIMH and the NICHD are two of the institutes at the NIH [National Institutes of Health] that Congress has specifically directed to increase their funding of FX research. Again this year in the budget signed into law by the president today these two institutes were given specific marching orders to focus more attention on FX. Likewise the record breaking $21.8 grant to the Hagerman led team at U.C. Davis/M.I.N.D. also came about because of Congressional directives included in the LHHS [Labor, Health and Human Services] budget each year.
These Congressional directives don’t just happen and they would not have happened if you, our advocates, hadn’t convinced your Members of Congress to support our cause. Congratulations on a job well done.
But we can’t rest on past accomplishments. While our work is done for the 2008 budget
IT’S JUST BEGINNING FOR THE 2009 BUDGET.
NFXF Advocacy Day will take place on February 26, 2008 (afternoon training session) and February 27, 2008 (Congressional visits) in Washington D.C.
Help us continue the exciting momentum we’ve established. Click on the link below to register for the next NFXF Advocacy Day.
The Advocacy Day Conference Hotel is the
The Melrose Hotel, Washington, D.C.,
2430 Pennsylvania Ave. NW,
Washington DC, USA 20037
All Hotel reservations can be made by calling the Hotel’s Reservation Department (202) 955-6400 or (202)-955-5359. Mention the NFXF.
Conference Rate: $239.00 plus tax.
Reservations can also be made online.
Thank you again for all your advocacy efforts. Your generous donations of your time, your energy, your dedication and your dollars are really paying off.
All our Best in the New Year,
Your National Fragile X Foundation Washington Team
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December 27, 2007
