Wednesday, December 21, 2011

Making a difference

I don't know if I mentioned on here the family that I met several months ago in the NICU at Childrens who had a son born with renal failure. He was too small for a transplant or dialysis and so they were basically waiting for him to die. There was almost no chance that he would survive long enough to get a transplant, and a miracle was about all that was going to help him. Well that miracle came! I saw the family tonight and the little boys kidneys just started working. I don't know how or why, but they were elated and are hoping to be going home sometime in January. I've thought about them a lot over the past several months and I'm just so happy for them.

There were generally fewer people than normal there when I was there tonight. I think that's awesome, given that Christmas is just 4 days away. Most of the folks that I had known all went home on good terms, and I can only hope that the ones that I didn't know so well also left on a high note. We spent one Easter in the NICU and it was definitely a bummer holiday, so I can't imagine having to be in there for Christmas. But I know that the kids in there need to be in there and are getting the best care they can.

We heard some great news from the Cystic Fibrosis Foundation again today. I got the following email from one of the Public Policy Directors:
I’ve got some great news to share. As you may know, late last week Congress passed the final FY 2012 Appropriations bill - or “omnibus” - at long last completing the budget process for the current fiscal year. Thanks to your hard work, the CF Foundation has achieved three of our main policy priorities in the budget, no small feat considering what a contentious year this was on Capitol Hill.

1) As we told you a few weeks ago, funding for the Food and Drug Administration was increased by $49 million in the 2012 budget. This boost will help reviewers to more quickly move important treatments from the lab to the patients who need them.

2) I am happy to report that the National Institutes of Health (NIH) will receive a $300 million funding increase in Fiscal Year 2012, providing resources to advance innovative biomedical research for diseases like cystic fibrosis.

3) Congress established the National Center for Advancing Translational Sciences (NCATS) at NIH in the final FY 2012 budget, one of the Foundation’s biggest priorities. The Foundation has been a strong supporter of this center and believes it will have a real impact on the advancement of drugs for serious diseases.

These victories show just how profound an influence citizens like you have on their members of Congress. In no small part because of your tens of thousands of calls, emails, and meetings, the federal government will have the tools to help us move closer to the cures of tomorrow. There is no doubt that your persistence helped make this possible, and you should be proud of all that you do.

Thank you for being such an integral part of Team Public Policy in 2011, and we look forward to an even better 2012! Happy holidays to all of you and your families.
That really is all great news for CF. I wanted to thank everyone who participated with me in clicking on links I provided through my blog and contacting decision makers to let them know how important all of this stuff is to us. We can and did make a different and I know that I will certainly continue my efforts going forward knowing that!

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