Skip to main content

Kudos to Congressman Dennis Moore

I’m one of those pesky people that gets myself all tied up into knots every so many months about one political issue or another – and I eventually write my Congressman or Senator. But never have I actually had one of them reply to me, so I was surprised when I discovered an envelope in my stack of mail that said, “United States Congress.”

I’d applied for a job at the Library of Congress, so I scratched my head and thought perhaps it was a rejection letter (that would be a first for a federal job). Inside I discovered a letter from my Congressman, Dennis Moore, Democrat, Third District, Kansas. Yes, I know it was a form letter, probably signed by auto pen, but someone actually bothered to put together a form letter to respond to me. I’m impressed. Okay, so I’m easy to impress.

I had written him about President Bush’s 2007 budget proposal which contains an $873 billion discretionary spending cap on health research and education. This translates to a $7 billion budget cut, which I fear, will take a big bite of the National Institutes of Health budget. The Senate passed an amendment that would have restored this funding, but alas, despite Dennis’s best efforts, the House didn’t approve it (and the vote went down party lines by the way, with the Republicans advocating the cut.)

Yep, we’ve all got our pet funding interests, and mine happens to be funding for medical research, and especially funding for the National Institutes of Health (NIH).

To other people NIH might be some big government agency, but to me the NIH campus and the Clinical Center on top of the hill is the house of hope.

Truth is if it weren’t for NIH, there’s no way we’d be close to the first treatment for the lung problems of Hermansky-Pudlak Syndrome (HPS). HPS is such an ultra-rare genetic disorder, and to make things even more challenging, it disproportionally affects a minority population (those of Puerto Rican decent). Throw into the mix that just about everyone with HPS is legally blind, and well, this is not the mix one would wish for to raise a few million dollars for medical research.

Yet people with HPS have a lot to offer medical research. NIH is using us to study a myriad of health issues including bleeding issues, colitis or Crohn’s Disease, pulmonary fibrosis and protein trafficking disorders. There’s a lot of talk about the possible genetic causes of these disorders independently.

Well here we are – a sort of human genetic knock-out mouse perfect to study. And, most of us are happy to be studied because it gives us a shot at treatments and maybe one day a cure. Without NIH, there would be no such hope for us, and medical science would have lost all that our cells have to offer.


The work that NIH does is important. Often, they’re doing research that couldn’t happen any other way.

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.

The blog is back, I hope

  What started as a way to share news about HPS and what it is like to live with Hermansky-Pudlak Syndrome has fallen apart badly! There are a lot of reasons for this. Some are related to health. Some are related to time. And some are related to mental health. Finally, the last obstacle was technical. I lost access to my blog. Every time I started to work on regaining access, something interrupted the process and I’d have to start all over again. Before you say it, I know. A blog is so old school. Haven’t you heard of a vlog Heather? Or maybe TikTok? I know my limits. I have a great face for radio. I’m not particularly eager to film myself. When I do, I feel I need to spend extra time putting on makeup or fixing my hair. Yet, often when I have the time to do something like this, it is early in the morning or late at night. I don’t want to “get ready.” I’m having a hard enough time squeezing this in without staging myself. Grin. I’m trying to start with small goals. Right now, I’m h