Living on the frontlines

Some time ago I told regular readers about Science Debate 2008. As you know, although I've got my own political opinions, and although this is a personal blog, because right now it's sort of an HPS defacto news site, I don't blog about my own take on politics. I don't want us to fight about things that have nothing to do with finding the cure. But, this is different. The HPS Network signed onto this project. The idea is simply to raise the profile of issues related to science in the presidential debate by getting the candidates to take a public stand on them. At least then no matter what your personal opinion - when it comes to the science issues that are near and dear to all of us, you'll know where the candidates stand. I'll post McCain's responses when I get them. This is a bit long and I would have just sent those interested to the Web site, however, it was very hard to read in light blue. I thought many of you would find it easier to read here in large

This past week I’ve had such a hard time sleeping. There are lots of reasons. I need a new CPAP mask and hose and with my current insurance that’s been a hassle. I’ve been so busy at work and I’ve got a pile of insurance issues, doctor calls etc to make. I haven’t had the time to sit on hold and work my way through all this stuff. I wish I had a day off, like Monday, when everyone else was at work so that I could get some of this stuff done! Work has been causing me a lot of anxiety – we’re working very long hours and there’s more to do than we have the staff to accomplish. I feel like I don’t breathe all day. Actually, I feel like I’m short of breath all day but I think it’s anxiety. And then when my brain finally shuts up for the night, I keep having this bad dream. My NIH trip is coming up. The last time I was at NIH and got the IUD, they discovered polyps in my uterus that needed to be checked out before we could proceed with the IUD. The doctors bent over backwards to get me in fo

We’re looking for volunteers. As many of the veterans know, the lung lavage fluid many of us have donated in recent years has really helped to make a dent in HPS research. It’s helped the scientists to start to understand some of what happens at the cellular level with HPS. It’s help them to begin to understand how the fibrosis happens. So, they need more lavage fluid. We’re looking for volunteers with HPS, any gene type, who would be willing to travel to the NIH and undergo a lung lavage. I’ve had a lung lavage, so if anyone has any questions about it, I can tell you what it’s like. To volunteer, you must be over 18. You should be in pretty good health. You can’t be on the Pirfenidone trial or the mult-drug trial. There may be some other medications/health conditions that could exclude you. The reason is that the docs at NIH would never want to do anything that could cause any other health condition to act up. Also some of the meds that HPSers take for other complications could impac

I’ve been wanting to blog about this for about a month now, but I was worried that people might think I was complaining. I was worried they’d start to worry too much about me in ways they shouldn’t. So, I’ve been trying to think of how to explain this for the purposes of recording it as “part of the HPS experience.” Here it goes. About a month ago I had the opportunity to attend a national conference of editors and journalists. It was a great opportunity and best of all, for me and my employer, it was right in my back yard. No airfares or hotel fees. Yippee. In some ways the conference was very exhilarating. There’s nothing like hearing about new ideas and new ways of doing things better to get you excited about your job again. In other ways it was incredibly depressing. Essentially what I learned (which I already knew) is that, in general, no one respects reporters or editors. Management (in general) sees us as a cost center easily replaced by the next crop of college graduates who al

This past week has been a very busy one in the HPS world. This week we registered nine new people on the patient registry! And only half of them, roughly, were from the Puerto Rico conference. So, with that, we’re not at 72 on the 100 People Search.

Here's another picture from Carmen. This is Hilda standing in front of one of the clinics they visited to get the word out about HPS.

Quite a while back I'd posted about the pending lawsuit against Target concerning the accessabiity of its Web site. Here's a press release regarding a settlement in that case. I'm glad to hear it was worked out and the improvements will be made. National Federation of the Blind and Target Agree to Class Action Settlement 8/27/2008 FOR IMMEDIATE RELEASE CONTACT: Chris Danielsen Target CommunicationsPublic Relations Specialist (612) 696-3400 National Federation of the Blind (410) 659-9314, extension 2330 (410) 262-1281 cdanielsen@nfb.org National Federation of the Blind and Target Agree to Class Action Settlement Target Will Ensure That Web Site Remains Accessible to Guests Who Use Assistive Technologies Baltimore, Maryland (August 27, 2008): The National Federation of the Blind (NFB) and Target (NYSE: TGT) announced today that they have settled a class action lawsuit regarding access to the Target.com Web site by blind people. Dr. Marc Maurer, President of the National Feder

Some of the long-time readers might remember some of the posts I’ve written about how excited I am regarding efforts being made these days to address the needs of blind/visually impaired kids in science classes. I’m not sure that I ever would have chosen science, or that I would have a natural aptitude for it given how numerically challenged I am – but I never even thought about it. It was one of those fields that, obviously wrongly, seemed about as out of reach as being a taxi driver. The National Federation of the Blind has hosted several science camps etc. And now here’s another conference addressing this subject. It’s a trend! Yippee!!!! Conference brings science into focus for visually impaired Aug. 6, 2008 by Terry Devitt Science can be a difficult topic for anyone to master. Imagine, then, trying to conquer chemistry, physics and astronomy without the benefit of vision. That, in fact, is an everyday problem for thousands of visually impaired individuals, and the traditional mea

The following story came through my Google alerts today. It’s from the opinion page of the Chicago Tribune and is written by someone with low vision. I thought some of you would enjoy it. I’ve always tended to be conservative on the reasonable accommodation front. I believe that nothing in life is really free, and that there is a price to be paid when you ask for something – so you better make sure it’s worth the cost – financial, emotional or social. If we as blind/low vision people really want to be equal members of society (as we all believe we are) than we must restrict our “ask” to the things that really do create equality. We need to ask for things that level the playing field in the greater world, and not things that simply change the field altogether. I’m not saying that there’s anything wrong with asking for an accommodation – I do it! I’m just saying that some accommodations promote independence while others foster dependence. Here’s an example of what I mean. When I was in

Here are some of the HPS adults that came to the conference on Saturday. Thanks for the photo Carmen!

This past Saturday the HPS Family Conference Puerto Rico was held in Ponce. We estimate there were about a 100 people there. That number is down from previous years, however. There was a snafu with transportation and the conference didn’t receive as much media attention as in the past, thus these factors may account for the attendance drop. Even so, the conference was a success. We found several people that might be candidates for some of the trials underway at NIH (although they’ll have to be evaluated further). We made some good contacts that we didn’t have before. The families that attended learned things they didn’t already know. The outreach accomplished during the week was also wonderful. While the conference was taking place, Carman and Hilda slipped away to give a lecture to a class of forty master’s students studying special education. That went very well too. Sometimes with these outreach efforts, it takes a little time for the results to filter in. We’re still getting folks

I tested this recipe and it was really good. Sesame Chicken Strips Ingredients 1 cup mayonnaise 2 teaspoons dried minced onion 2 teaspoons dried mustard 1 cup crushed butter-flavored crackers ½ cup sesame seeds 2 pounds boneless chicken breasts Methods In a bowl combine the mayonnaise, onion and dried mustard. In another bowl combine the crackers and sesame seeds. Cut the chicken into strips. Dip the strips into the mayonnaise mixture and then into the cracker and sesame seed mixture. Place on a large greased baking sheet (with sides so any juices don’t run all over the over). Bake at 425 for 15 to 18 minutes. Serve with your favorite dipping sauce. Note: Cut calories by using reduced fat mayonnaise or plain yogurt. Use low calorie crackers instead of butter crackers.

I made this tonight - and it was yummy! Cucumber salad Ingredients 1 cup mayonnaise ¼ cup sugar 4 teaspoons vinegar ½ teaspoon dill weed 4 medium cucumbers peeled and cut thin 3 green onions chopped finely Method Combine the mayonnaise, sugar, vinegar and dill weed in a bowl. Add the thinly sliced cucumber and the green onions. Toss and chill. Note: To make a low calorie version of this salad try using reduced fat mayonnaise and Splenda instead of sugar.

Here's Ashley this morning with another little HPS'er.

The HPS crew gives a lecture at a local University.

This week we added three new HPS’ers to the HPS Network registry. I suspect there will be a few more as the outreach in Puerto Rico takes place and word gets out. Those might take a bit to gather, however. With three new HPS’ers this week, however, that takes us to 82 left on the 100 People Search.

I cut this recipe out of a magazine thinking it might be fun to make lemonade the old fashioned way. It's a lot easier if you have a juicer. I had to squeeze by hand and it was a lot of work. But, it was the best lemonade I've ever had - way better than concentrated stuff. It hits the spot on a hot day! Old Fashioned Lemonade Ingredients 5 lemons 5 limes 5 oranges 2 cups of sugar 3 quarts of water (or less if you like it tarter) Method Squeeze the juice from four of the lemons, limes and oranges into a gallon container. Make sure you get every last drop possible. Thinly slice the remaining fruit and set aside to be used as a garnish. Add the water and sugar to the juices and mix well. Chill in the fridge and serve over ice. (You can experiment with how tart or sweet, or how watered down the lemonade is by altering the amounts of sugar and water to taste.)

Today is a slower day for the gang in Puerto Rico. A few of them went to a factory today that employs people who are legally blind. Many of the people there are HPS’ers. The factory would only allow five people in, however, thus the rest of the group set about doing last-minute publicity for the patient conference or doing whatever else needs to be done for tomorrow. Tomorrow is the patient conference. Please say some prayers for its success. I understand there have been a few issues with transportation and I’m not sure if they got worked out or not. Since many HPS’ers don’t drive, this could be a factor in attendance. Everyone has worked so hard. We’re really rooting for them here. The first part of the day will be presentations from the doctors and the second part of the day will feature a kind of talent show, from what I’ve heard. This will give individuals time to slip off to the back to talk to the doctors one-on-one or get their blood taken for HPS testing. I’ll update as soon as

Here's another photo from the doctors' lecture yesterday.

This is a photo from yesteday. Dr. Markello is giving a lecture about HPS to other physicians in Puerto Rico.

Here's part of the U.S. HPS Network board and the Puerto Rico board posing for a picture with Dr. Izquierdo. Dr. Izquierdo is well-known to the HPS'ers in Puerto Rico.

Here's Donna, Richi and Rucardito during an interview at Dr. Izqhierdo's TV show En Cuerpo y Alma ( in mind and soul). They had to be there super early in the morning. Way to go gang!

This morning it was time to talk to the media. Here Dr. Markello and Kevin O'Brien are getting ready to be interviewed about Hermansky-Pudlak Syndrome.

Carmen sent this picture yesterday and I didn't have time to get it up. This is a little baby that appeared at one of the stops yesterday. We don't know yet if the baby has HPS, but the family was interested. This comes under the category of things that make you go "awwwhhheee."

This article came from the Associated Press....it's just an update for those of you following the issue. Calif. says green cars need more noise pollution 21 hours ago SACRAMENTO, Calif. (AP) — Electric and hybrid vehicles may be better for the environment, but the California Legislature says they're bad for the blind. It has passed a bill to ensure that the vehicles make enough noise to be heard by visually impaired people about to cross a street. The measure would establish a committee to study the issue and recommend ways the vehicles could make more noise. The state Department of Motor Vehicles says more than 300,000 of the vehicles are on state roads. Officials say they don't keep statistics on pedestrian accidents involving those vehicles. The bill has been sent to Gov. Arnold Schwarzenegger, who has not taken a position.

Here's a press release that has come out from the NFB about a new program they are offering to provide free canes to anyone who needs one but can't afford them. Some of you like my telescoping cane - but this program only includes (at least it sounds like it in the release) the straight, non-folding type of canes. But hey, if you want to try a cane and buying one is holding you back - give it a go. National Federation of the Blind Launches Largest-ever White Cane Initiative 8/19/2008 FOR IMMEDIATE RELEASE CONTACT:Chris Danielsen Public Relations Specialist National Federation of the Blind (410) 659-9314, extension 2330 (410) 262-1281(Cell) cdanielsen@nfb.org National Federation of the Blind Launches Largest-ever White Cane Initiative Free White Canes to be Provided Nationwide Baltimore, Maryland (August 19, 2008): The National Federation of the Blind (NFB), the nation’s oldest and largest organization of blind people, today announced an initiative to ensure that any blind perso

After a day that started before the sun was up, the HPS outreach team took a little break to walk on some sand and look at the ocean. Look at how blue it is!