Skip to main content

It's that time of year again - let Congress know how much the NIH means to you

It's that time of year again. Budget battles for the next year are underway, and those of us who believe in the mission of the NIH and who benefit from its work need to speak up and let Congress know this is a good way to spend precious government resources.

The thing is a lot of the research that happens at NIH couldn't happen anywhere else. It would be too expensive, and too risky, for a traditional setting.

The NIH has lead the way in HPS research and we must continue to speak up and be heard to keep that moving. They are also investigators for Chediak-Higashi Syndrome, another closely related syndrome to HPS. And, now, they also have other albinism protocols underway.

Below is a tidbit from the American Thoracic Society's e-newsletter I'm posting just as a general update. I'll keep my eye on how the debate is going and post further updates here.


ATS Joins Letter in Support of Increased NIH Funding
This week, the ATS joined an ad-hoc Group for Medical Research letter to the United States House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies in support of increased funding for the NIH. The letter requests $35 billion for the NIH in FY 2011. The letter states, "By supporting $35 billion for biomedical research and the NIH, you can help ensure the nation does not lose the health and economic benefits of this extraordinary investment (the American Reinvestment and Recovery Act) and take the next crucial step by beginning a course of sustained NIH funding in the FY 2011 budget and beyond."

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Help for one of our newest HPS friends

As many of you know, I have a google alert set up for all sorts of key terms like albinism, pulmonary fibrosis etc. The following was posted on the blog of a friend of Melanie's. Melanie is one of our newest members of the Hermansky-Pudlak Syndrome family. Unfortunately, like so many she didn't know she had HPS and the lung disease sort of snuck up on her. Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday. Here's the post: Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis. With the family’s research and the recollect