NOAH AOC

Cures don’t come for free

Living on the frontlines — Fri, 18 Jul 2008 17:55:00 GMT

If you’ve ever toyed with the idea of doing your own Hermansky-Pudlak Syndrome fundraiser, now would be a good time. We’ve had a very busy spring and summer at the HPS Network. We’ve attended multiple medical meetings, spoken to thousands of researchers and physicians, marched in the New York Puerto Rican Day Parade, helped dozens of people connect with the NIH for research-oriented treatment, hosted the New York conference, hosted a major outreach effort in Florida and attended NOAH as an outreach...(read more)

Back to being drunk tired

Living on the frontlines — Thu, 17 Jul 2008 15:03:00 GMT

This week has been a tough one from the fatigue point of view. I’ve been taking my daytime medicine and trying to use the CPAP at night, but I find myself waking up six to seven times a night needing to go to the bathroom for varying reasons. Or, I’ll wake up because a neighbor has turned their car on in the parking lot and shined their bights in my window – or the neighbor’s gaggle of dogs is out again barking and howling. Usually I can sleep through these things so I must not be getting any deep...(read more)

The chase for the cure

Living on the frontlines — Wed, 16 Jul 2008 17:33:00 GMT

The following article appeared on the Coalition for Pulmonary Fibrosis Web site. I thought it was a very nice summary of some of the major developments in pulmonary fibrosis research in the last year as well as what's on the horizon in the next year or two. Sometimes it amazes me how far we've come just in the six years since I learned I had HPS. CPF Chairman Marvin Schwarz, MD Discusses IPF Research with BioWorld Today Reporter Rare Pulmonary Fibrosis may Have Blockbuster Potential By Catherine...(read more)

Congress overrides Bush on Medicare

Living on the frontlines — Wed, 16 Jul 2008 17:16:00 GMT

The following is a press release that came from the American Thoracic Society. It involves two issues of importance to us. First, without this action the amount of payment doctors recieved from treating patients on Medicare would have been cut. Trust me - it isn't the docs getting rich off of Medicare patients. And to penalize them for treating Medicare patients by not paying market rates would mean that Medicare patients would find it harder and harder to find a doctor willing to take them on...(read more)

Christmas in July

Living on the frontlines — Tue, 15 Jul 2008 17:52:00 GMT

Regular readers have seen this egg before. I'm posting it because we've been talking about how people with low vision can indeed do art on the HPS adults listserv lately. I don't have a lot of artwork around as I can't paint as much as I once did. But, I do these eggs around Christmas time. They end up being presents and then this year I donated a few eggs to the HPS Network Craft Bank and they were sold at conference with the funds benefiting the HPS Network. The egg is made of paper...(read more)

Bye bye Google ad?

Living on the frontlines — Tue, 15 Jul 2008 03:55:00 GMT

Regular readers might notice that the ad that regularly appears in the top right corner of the blog has disappeared. This evening I got a letter from Google saying that my Google ad account had been shut down. Apparently they detected some sort of thing where someone was clicking over and over and for the protection of their advertisers they shut down the account. I’m having mixed feelings about the letter. On the one hand I totally understand where they are coming from. I have also been a google...(read more)

Ahhhh...that feels good!

Living on the frontlines — Tue, 15 Jul 2008 03:37:00 GMT

Here's a pic of a barn cat at Jessica's. He's so cute!...(read more)

My mom’s in town!

Living on the frontlines — Mon, 14 Jul 2008 18:04:00 GMT

My mom is visiting me right now. So far it’s been a good visit. Yesterday we went to see the new expansion of the Nielson-Atkins Museum of Art. It’s been open for quite a while, but I’ve never had anyone that wanted to go. My mom was an art major for her undergraduate work and knows a lot about art history, so she’s fun to go to museums with because she can often tell you a lot about the artists etc. I really liked the new section. The first part was a lot of modern art and pop art. That isn’t so...(read more)

Cooper takes a spill

Living on the frontlines — Mon, 14 Jul 2008 16:23:00 GMT

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The signing of GINA, and a thought for Friday

Living on the frontlines — Fri, 11 Jul 2008 20:36:00 GMT

I'm working on the HPS Newsletter and was trying to find an image of the signing of GINA by President Bush. I found this one on the White House Web site, although the resolution is crappy and they don't make high res pics available, not even in the media section. I have to say, the Clinton administration had a much better online media room - but that's a story for another day. I saved this pic, and then I had a wacky Friday thought. I looked around at all the piles of paper, all the things...(read more)

Shilo with her grandma - my aunt Brenda

Living on the frontlines — Fri, 11 Jul 2008 17:55:00 GMT

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Great uncle Kenneth plays with the barn cat

Living on the frontlines — Fri, 11 Jul 2008 17:03:00 GMT

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Shilo hams it up for the camera

Living on the frontlines — Fri, 11 Jul 2008 17:01:00 GMT

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Danny's daughter eats ice cream

Living on the frontlines — Fri, 11 Jul 2008 16:59:00 GMT

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Grandma and Aunt Phyllis

Living on the frontlines — Fri, 11 Jul 2008 16:55:00 GMT

Grandma and Aunt Phyllis enjoy talking at Jesse's farm on the 4th of July....(read more)

Sunset at Jessie's farm

Living on the frontlines — Thu, 10 Jul 2008 17:23:00 GMT

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A room full of families learn about HPS in Florida

Living on the frontlines — Thu, 10 Jul 2008 17:21:00 GMT

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Hunter playing frisbie

Living on the frontlines — Thu, 10 Jul 2008 17:17:00 GMT

This is my cousin Danny's son Hunter playing frisbie at Jessica's (Danny's sister, my cousin) farm on the Fourth of July....(read more)

It's my grandma!

Living on the frontlines — Thu, 10 Jul 2008 17:14:00 GMT

I thought this picture of my grandma turned out well. She's 91 years old tomorow! Happy Birthday Granda!!!!...(read more)

Squash the stigma

Living on the frontlines — Wed, 09 Jul 2008 19:13:00 GMT

The following article ran on the ABC News site. I encourage you to click through. The first part is about Rick and his photography, but it also talks about the upcoming NOAH meeting and efforts underway to help the people with albinism in Africa. That's something I'd like to help with if at all possible. Having HPS makes albinism much more than a matter of vision or appearance for me - but I can't imagine being hunted down like an animal for your body parts. I can't even get my head...(read more)

Debbie's cuties

Living on the frontlines — Wed, 09 Jul 2008 18:50:00 GMT

Debbie is one of the HPS'ers that worked so hard to organize the recent HPS Florida conference. And when mom is organizing an HPS event, you can bet the rest of the family joins in too. Here's a pic of Debbie's daughters. They're both such sweethearts!...(read more)

The cutie Cooper

Living on the frontlines — Wed, 09 Jul 2008 18:46:00 GMT

This is my cousin Jessica's little boy. Don't you know he'll just love that headline when he's 15!...(read more)

Calling all of those with albinism in Chicago!

Living on the frontlines — Wed, 09 Jul 2008 18:42:00 GMT

The Vision of Tomorrow is a foundation that works to fund albinism research as well as support the albinism and low vision community in other ways. They've been a supporter of the HPS Network, for example. They have an upcoming family event/fundraiser in the Chicago area. It sounds like a lot of fun! Here's the e-mail I was sent yesterday. Dear Friends: As many of you know, we are the founders of the Vision for Tomorrow Foundation. Our daughter, Tess, is visually impaired. We started this...(read more)

Kevin chats with an HPS'er in Florida

Living on the frontlines — Tue, 08 Jul 2008 03:41:00 GMT

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HPS'ers and family chat at the Florida conference

Living on the frontlines — Tue, 08 Jul 2008 03:28:00 GMT

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