Living on the frontlines

Another conference teaser!

Here's another conference teaser! We're all looking forward to hearing Candice and Crystal sing!

I was happy to find this on YouTube - just like this song. And of course I'm a huge John McCeutcheon fan!

The sound quality on this file isn't great - but I think this song applies to the HPS Network very well - it takes a lot of little peices to make things happen.

I must confess - I stole this video from Sara's Facebook page. It's of Ryan playing with his nephews. It's just too funny! And so cute!

I got the following e-mail this morning from a good HPS friend, Nancy. Nancy and her husband owned a wine shop for a while with another couple. She's a wine lover! I'm posting this to support her efforts. I know at least one wine lover that reads this site. Grin! From Nancy: I have some exciting news to share with you! I’m back in the wine biz as a Wine Consultant for WineShop At Home. We offer wine tastings in the comfort of your home, monthly wine club, great stemware, personalized wine labels, and gifts. Dave and I have already sampled several of the wines and we are impressed! We’ve also tested the stemware against our Reidel and it definitely compares, at half the price! I invite you to visit my website at http://www.wineshopathome.com/nancylee to learn more about the products and services I have to offer. While you’re there, sign up for my free monthly e-newsletter, The VinNote, that features wine lifestyle articles, product previews, and wine education. I welcome t...

This is a press release from NORD, the National Organization for Rare Disorders, about Rare Disease Day. I'll write more about this later. Countdown to Rare Disease Day CONTACT: Mary Dunkle mdunkle@rarediseases.org (203) 744-0100 (office)(203) 942-6443 (cell) FOR IMMEDIATE RELEASE Day to Focus on Rare Diseases as Public Health Issue Danbury, CT, Feb. 25, 2009-----Millions of Americans affected by rare diseases—and millions more around the world—will observe “Rare Disease Day” this Saturday (February 28, 2009) with special events, proclamations, and online postings. A counter has been installed on the website of the National Organization for Rare Disorders (NORD) at www.rarediseases.org to count the days, hours, minutes, and seconds until the first-ever Rare Disease Day to be observed in the United States. “The theme of this day is that rare diseases are an important public health issue,” said NORD President Peter L. Saltonstall. “Although each disease may affect a small number...

Author and radio personality Debbie Mandel to speak at the HPS Family Conference Living with health challenges can be stressful whether you’re a caregiver or the affected person. Get a few tips on how to manage those stressful situations from Debbie Mandel, a well-known stress management specialist. Mandel is back by popular demand after her humorous, energetic and heart-felt presentation last year. Come prepared to laugh and let go of life’s pressures. Debbie Mandel, M.A is a stress-management specialist, radio show host, mind/body lecturer, creator of an educational website, and the author of three self-help books: Addicted to Stress:A Woman's 7 Step Program to Reclaim Joy and Spontaneity in Life , Turn On Your Inner Light: Fitness for Body, Mind and Soul and Changing Habits: The Caregivers’ Total Workout. She conducts inspiring stress-management workshops for people from all walks of life: Couples, medical personnel, cancer survivors, staff development, caregivers, nuns, teach...

I've read a lot of horrible stories about the situation in Tansania and Burundi - but this one turned my stomach. I can't believe that humans are capable of being so cruel to one another. I know, nothing new to history, but I can't imagine it. Thank God it's beyond my personal understanding. I can't stop thinking about this child and his parents. Albino boy slaughtered in Burundi Agence France-PresseFebruary 24, 2009 BUJUMBURA - A six-year-old albino boy was dismembered alive in his home in Burundi, the latest in a string of murders linked to witchcraft, a police spokesman said Tuesday. "Last night at around 10:00 pm (2000 GMT), a group of criminals attacked a family in Ruvumo town, in the northern province of Kayanza," Pierre Chanel Ntarabaganyi told AFP. "They tied up the parents of a six-year-old albino boy and then chopped off his arms and legs before running away... The child was dismembered alive and his screaming woke up the entire neighbourhoo...

This article comes from a newsletter that was forwarded to me. It's put together by a Web site called www.specialneedsanswers.com . I skimmed the site and I'll be going back - lots of good info there, especially for families of special needs kids. Some of these programs have really been hurting these past few years. I was very pleased to see that funding was being given to social security to help them with the backlog of disability claims. I really, really, really, need them to process my case and get the checks flowing. Things are starting to get very tight. Stimulus Package Includes Increased Spending on Programs for People With Special Needs Last Updated: 2/18/2009 President Obama recently signed the American Recovery and Reinvestment Act of 2009, better known as the second economic stimulus plan, into law. While not as far-reaching as the original House stimulus plan, the law does significantly increase federal spending across a wide range of initiatives, including many pro...

Two of our bowlers - Lyra and her big brother Dominick.

A few more pics from the NOAH bowl-a-thon....here's Lyra gulping down her drink. Grin!

Here's a pic to get your juices flowing for conference. I might have posted this pic last year after conference - but I'm posting it again as I was so tickled to find it. Every year at the HPS conference we have what is called the "Family album" session. We all sit in a huge circle - all 200 plus of us - and everyone gives a brief update on what's happening in their lives, and what they are looking forward to in the next year. Here everyone is grinning because Ryan is telling us all that he's met this girl he really likes - it's his event of the year - and guess what? It was Sara. This year his big event will be getting married to the girl he told us all about last year. And I got a picture of the moment! Grin!

Here's something to make you go awe....our littlest bowler, four months old. Her family drove a long way to come to the bowl-a-thon and meet everyone.

Here's another pic of Mark. I also just liked the composition of this photo. I love photos taken on the fly, not posed or planned. Here Mark is looking for his ball to come back.

This is Mark, my new buddy. Mark was one of the bowlers at the NOAH Kansas City bowl-a-thon. I'm not going to post a ton of pics from the bowl-a-thon, but there's a few I love so much I don't think I can contain myself. Mark doesn't have HPS, but rather has one of the other types of albinism. He's a smart little guy. He wore his Superman outfit to bowl because one of the local chicken places was offering free kids meals if you came in dressed as your favorite super hero. Mark kept me on task at the bowling event. I can't resist a great opportunity to take pictures so you know how I am - running around with the camera - but good old Mark would say, "Heather - Heather, it's your turn!!!" Then, being a budding little sports commentator, he'd say, "Heather's working on a spare......" And, since I'm working on conference materials, his picture is timed well for me. He he he....our theme for this year's conference is Superheroe...

Below is a story that appeared in today's New York Times. It's about the undiagnosed disease program - but you'll recognise so much of the NIH experience in this story - even down to our favorate ward - 5 NW - home away from home! Be prepared for a long read - maybe print this out in large print and settle down with a nice pot of tea. It's a long read. What’s Wrong With Summer Stiers? By ROBIN MARANTZ HENIG Published: February 18, 2009 Her breasts are beautiful. This is a surprise. Seeing them looking so healthy and normal reminds you how young this patient is and what her life might be like if her body hadn’t started to disintegrate in her childhood. If all you could see were her breasts, you would think she were perfectly fine. But that would be like the blind men trying to describe the elephant when each one focuses on a single part. Look at the rest of this patient’s torso, and you start to get a sense of the fuller story. A little bit higher, near the left clavicl...

This afternoon I was happy as a clam. We had our annual bowling event for NOAH, and I got spend time with these great kids and their parents. Aren't they a bunch of cuties? Now, trying to get everyone to pose for a picture is another story. It's like herding cats. This was a general albinism event. None of these kids are HPS'ers. They are just precious!

Just a quickie update for my records mostly. Today the mouth sores didn't hurt as much. They didn't seem as "angry" as they have these past two days. I have no idea why, but I got to eat some chicken for dinner. Yeah! I'm already so sick of soup! I had a minor breakout of hives this afternoon, but they went away rather quickly. The frustration of the day was three code browns in the course of two hours. The sore under my stoma that was the size of a quarter isn't bleeding and is looking like it's healing over. I don't know what the problem is except that I've had the runs, and that seems to increase the number of code browns. I was happily at Homers just blasting through HPS work and suddenly I had to race home to avoid disaster. At least I wasn't at the office waiting an hour for a cab!

I just saw this news story and I had to post a link, even though it has nothing what so ever to do with HPS, or my personal life. It's a story about two high school basketball teams that seem to have their priorities straight - refreshing in an era of parents fighting in the stands and professonal athletes being found guilty of everything under the sun every other day. These kids have a lot to teach sports, and a lot to teach us all. Winning isn't always about the score. Here's the link: http://highschool.rivals.com/content.asp?CID=914609

I meant to put this with the last post but was having uploading issues - this is our wonderful and brilliant Dr. Young. We are so lucky to have her interested in HPS, and I for one, can hardly wait to see her again.

Attendees at the HPS Network Conference in Uniondale, NY, to be held March 20 – 22, 2009, will be able to hear the latest research developments from Dr. Lisa Young. Dr. Young has been studying the lungs of mice with HPS for the past two years thanks to a grant partnership between the HPS Network and the American Thoracic Society. She will be updating the Network on her research findings during the scientific sessions on Sunday. Dr. Lisa Young is an Assistant Professor of Pediatrics and Medicine at Cincinnati Children's Hospital Medical Center and the University of Cincinnati. She is a pulmonary physician for both adults and children, and is the director of the pediatric Rare Lung Diseases Program. We first got to know Dr. Young at the 2004 American Thoracic Society meeting. Since then she has gone on to publish papers related to HPS and is the first researcher to be funded by a joint grant from the ATS and the HPS Network. She also won the Carl Booberg award from the ATS for her ...

There are some days when maybe it's best that I'm single. I think today is one of them. Were I married, some poor schmuck of a guy would have gotten an earful today. I'm not sure what's going on with the tooth, or whether it is even really the problem. Now I have these little ulcer-like things on the inside of my cheeks. I think they must be in my throat as my throat hurts. And, this morning I was essentially one huge hive. I've accomplished nothing today - and that makes me grouchy. I don't like to feel like life is passing by and I'm wasting time. But, these mouth sores really hurt, and between that and the benedryl for the hives - well, to say that today I haven't been operating at maximum capacity is an understatement. Maybe one-fourth HPS duty, one-fourth necessity of life stuff, and one half pretty much asleep. As usual, I feel better this evening, but I can't concentrate. Groan. Gripe - as my friend Sheena would say, someone pass the cheese to...

I was reading my Braille Monitor over the weekend and found the following story. I was both mortified to think that this sort of thing is still happening now, in the 21st century – but then I thought about it again. Sadly, I guess I shouldn’t be surprised. The story is about a man who is blind. In his divorce case, his ability to parent was brought into question simply because he is blind – even though he’d already been a successful parent for years. I am not a parent and likely never will be. It’s something that truly breaks my heart and can make me very emotional. I always wanted to be a mom. I’ve worked with kids of all ages, and for a brief time, even worked as a nanny during my summers in high school. Yet, for some reason, since I began using my cane – something I happen to find incredibly helpful – no one seeks out my help with children (outside of the blind community and a few close friends who know better.) I have volunteered to babysit for couples at church for free – some of...

It isn’t what you might think. Born into Brothels is one of my recent watches on Netflix. It’s a documentary about the children of sex workers in Calcutta. Actually, the film has very, very little to do with sex at all. It’s much more about a photographer working to record the lives of women living in the red light district. She moves into the brothel so that she can truly get into the lives of her subjects, and while there discovers the lives of these beautiful children who happen to have the misfortune of being born into such a difficult place. She decides to set up a photography class for the children and as she teaches them, and sees their world through their own eyes, she becomes more and more attached to them. Eventually, she makes it a personal mission to try to help rescue some of these children from a life with little hope for a future by getting them admitted to school. To pay the expenses, she manages to set up exhibitions of their photography in the U.S. etc. In the end wha...

Attendees at this year’s HPS Family Conference will learn about genetics from one of the world’s leading experts on albinism. Dr. Murray Brilliant will explain how HPS is inherited by using pool noodles to represent genes. His presentation was a big hit at the NOAH meeting last summer. He will also be presenting at NOAH New York, to be co-located with the HPS Family Conference. Dr. Murray H. Brilliant, Ph.D., has been the Lindholm Professor of Genetics in the Department of Pediatrics at the University of Arizona College of Medicine since 1997. Dr. Brilliant chairs the Research Steering Committee of the Department of Pediatrics and is the Director of the Genetics Graduate Program at the University of Arizona. He has served on the editorial boards of various scientific journals and has served on numerous NIH review panels. Dr. Brilliant received his Ph.D. in Molecular, Cellular and Developmental Biology from the University of Colorado at Boulder in 1984. He has held faculty positions...

A new Yahoo group has been launched for families impacted by Chediak-Higashi Syndrome, a rare type of albinism that involves a bleeding disorder, immune system deficiencies and often progressive neurological deficits. The group is intended to help families impacted by CHS get to know one another, offer each other support and begin to advocate as a group for issues of common interest. For now, the group will be moderated by Heather Kirkwood, Vice President of the Hermansky-Pudlak Syndrome Network. Although CHS is very rare, improved diagnostics and genetic testing is increasing the number of families diagnosed with this type of albinism. Research is also moving forward and identifying different types of CHS, some more severe than others. It is the HPS Network’s hope that by improving communication among these families, all will be better able to take advantage of scientific advances as they occur.

Today I got a report from www.igive.com . It seems some of you have been shopping for the cure - and that's great!!!!! Just a reminder - www.igive.com is an online shopping mall with more than 700 merchants. When you shop going through the igive site, and you choose the HPS Network as your charity, we get a percentage of the purchase price. Thanks so much for shopping for the cure!

The Associate The Associate is a Woopi Goldberg film that came out in the 90s. It’s cute and something great to watch if you’re looking for something funny that doesn’t require too much in the way of actual brain cells. The story is about a talented investment banker (Whoopi) who just can’t seem to break through the glass ceiling. When her assistant gets promoted over her, it’s the last straw and she strikes out on her own to start her own business. The trouble is the good-old-boys club is just too strong on Wall Street, so she invents a business partner – a good-old-boy of her own – to break into the necessary circles to make the right deals. She’s very successful, but eventually the plan backfires. I especially enjoyed the sections of the film where Whoopi was trying to start her own business. I feel like that a bit in a way – that to find a way to earn an income working on HPS is like starting a business. If only I were as good at it as she is. This is not exactly a family night fil...

I haven’t blogged about my personal life in a bit – and need to do a health update as Friday was my KU Med day. Friday was a mixed day. I got up too late because my sleeping patterns are once again completely out of whack. I tried to stop by UPS to send the most recent stack of social security forms to my attorney, but their fax machine wasn’t working. Oh goodie – a waste of a mile walk. Well, I guess I needed the exercise. I went to the doctor with my little journal of symptoms and blood pressures. We had changed my blood pressure medication when I was at NIH, and until everyone is happy with the results, I have to go back once a month to review it. There for a bit in January I got to be quite the hypocontriac about my blood pressure. I had a few instances when it dropped too low and I got very dizzy and felt like I was going to pass out. Living alone, that’s especially scary. I had a nice talk with Donna about it. Donna worked in a cardiac ICU unit for years, so I knew she knew about...

This week we added two new HPS'ers to the HPS registry - that leaves 33 HPS'ers left to find on the 100 People Search. Way to go!

Well, whether you love it, or you hate it - it's done. Here's a message from the American Thoracic Society about the measures in the bill of particular interest to them - in other words, here's what in the package for those of us who are very interested in lungs! Woohoo! Grin. Congress Passes Final Economic Stimulus Bill The House and Senate gave final approval today to the $790 economic stimulus legislation, the American Recovery and Reinvestment Act. The House passed the bill by 246-183 and the Senate followed by a vote of 60 - 38. The President is expected to sign the legislation into law within the next few days. The bill includes the following priority measures for the ATS:• $10 billion for NIH, with:o $7.4 billion for NIH Institutes and Centerso $1 billion for competitive research infrastructure constructiono $0.3 billion for shared research equipmento $0.8 billion for the NIH Director for two year research projects. • $1 billion for CDC prevention and wellness acti...

A few weeks ago I asked readers to pray for someone I referred to as “the unknown HPS’er.” This person, unfortunately, was like so many with HPS that go undiagnosed and that we can’t help much. I learned today that this person passed away Monday. Although only a few of us even knew about this person, I feel as though everyone with HPS should be remembered, and thus, although I can’t tell you much, I still want to honor this person’s memory. This person lived in South America. They were already quite ill by the time we learned of the situation – too ill to make a difficult and expensive journey to the United States to go to the NIH. We had so little to offer and felt so helpless. We tried our best to offer moral support – but what this person wanted, what we all want, is the cure. They found it hard to believe that in the United States, land of shiny hospitals and state-of-the-art care, that we didn’t have an answer. It ate at us as various family members reached out looking for help, h...

Reminder: Don’t forget to turn in your registration forms for the HPS Family Conference The 16th annual HPS Family Conference grows closer every day! Don’t forget to send in your family’s registration forms. It is especially important this year that we have a reliable head count for conference. The cost of producing the conference has gone up this year and we want to keep costs down for our members. One way to do that is to not have to order extra things we don’t need. We also need a reliable head count for child care. We need to know how many child care workers we’ll need in advance. And, we need to know in advance how many children want circus tickets. Don’t delay – submit your registration forms today! If you’ve lost them, you can obtain a new one on our Web site – www.hpsnetwork.org , or you can call the HPS Network office at: 1 (800) 789-9HPS.

Donna Appell, President and Founder of the Hermansky-Pudlak Syndrome Network, will be making a presentation about the syndrome at Brooklyn Hospital tomorrow at noon. She will be presenting to the pulmonary department during lunch. Everyone please say a prayer for Donna tomorrow.

As those who know me already know, I’m a sucker for historical dramas. I especially love Jane Austin and other stories from the same period. I can’t quite figure out why. Why is it so appealing to watch stories about the lives of women during this period? Why is it so appealing to follow the lives of women who have only one goal, one thing that seems it will give their lives any meaning – marrying well. I guess if being an old maid is a fate worse than death, I can be grateful I didn’t live then. Although good old Jane never married and somehow she survived. Perhaps it’s the gentile manners, the prescribed codes of conduct or just the flowery language. And can you imagine these men? I truly wonder if men of this era were as prone to get swept up into the romantic goings on around them this way? At any rate, they seem to have a sense of romance that men, in general, in the real world, seem to lack. Perhaps if one were to develop a curriculum for men on how to be romantic, Jane Austin sh...

These are my friends Brian and Leean. They were recently married and went to Venice, among other places, on their honeymoon. Leean started posting some of the pics to facebook and I fell in love with them. I can hardly wait to have enough time to paint some of these. I asked her if I could post a few - so here they come. Just a little mind vacation.

If you've been at all involved in the Hermansky-Pudlak Syndrome community, then you know the singing duo of Candice and Crystal Sipe called Angels in Voice. They are awesome! I look forward to hearing them sing every year!!!! On April 3rd they are holding a benefit concert for the Hermansky-Pudlak Syndrome Network at the Thomas Road Baptist Church in Phoenix. The event will begin at 7:00 pm. I'm going to post their flyer when I figure out how to get it to work. In the meantime, I tried to post a video from last year's benefit concert to give you a taste of what to expect if you're in the area and can go - but YouTube isn't cooperating either. It couldn't possibly be user error you know - ha! At any rate, check out the video here: http://www.youtube.com/watch?v=IVPa-koa9M4&feature=related

A while back the HPS adults listserv decided they wanted to study some of the problems associated with HPS in little, easy-to-understand chunks. The hope was that when we're at conference, we might have a better vocabulary and working understanding to better understand the presentations of the scientists. This has turned out to be way harder to boil down than I ever could have imagined. Donna and I have worked on this for a few weeks. At any rate, here's a very basic look at the anatomy of the overall lungs. The Respiratory System Lungs – the overall view Oxygen is essential to the functioning of our bodies and it is the job of our lungs to make sure that our blood cells get all the oxygen they need. We all have two lungs. The right lung is bigger than the left lung. The lungs are divided into sections called lobes. Each lung has an upper and lower lobe, and the bigger lung, the right one, also has a middle lobe. In between the lungs are our heart, the windpipe or trachea an...

It's getting to be conference time!!!! I'm going to post some teasers from now until conference about some of the things you'll see and people you'll meet at this year's HPS Family Conference in New York. This year the kids will get to clown around at the circus!!! Imagine our delight when we found out that the circus would be in town the same weekend as our conference - and even better right next door!!!! This is the Barnum and Bailey Zig Zang Zoom! Red Tour. To see a video of what you might see or to learn more about the stars of the show, go here: http://www.ringling.com/TopLanding.aspx?id=15322&parentID=512&assetFolderID=516 Children signed up IN ADVANCE for child care at both the HPS Conference and the NOAH New York Conference will be able to attend. There is an extra fee for circus tickets. Check with the event you’re attending (the HPS Conference or the NOAH New York Conference) to make sure your child has a circus ticket if they wish to go. Tell your...

I spoke with Karen this evening. She's only $15 away from breaking the $1,000 mark on the Human Race fundraiser taking place in Greensboro the weekend after conference. Way to go!!!!!! Keep up the great work!!!! That's really exciting, especially given the state of the economy. Pictured here are last year's walkers.

They haven't finished the renovation. The seats looked like new and were sitting in the hanger. Because of the way this plane rests on its tail - a tail dragger - it feels super slanted inside, like you're walking uphill.

This is the front view of the DC-3 at the airline museum. They are currently in the process of restoring this plane. This type of plane was also used by the Allies during WWII. You see it a lot in old movies.

Unfortunately, I don't know enough about airplanes to tell which plane at the Kansas City Airline Museum this is from. Sorry! But perhaps Dad or Ryan will know.

Back in the good old days of commercial aviation, before super computers could fit in your cell phone, there was a whole station for a navigator right behind the cockpit.

Special Event for NAPVI Parents Art Education for the Blind Art Beyond Sight Institute Workshop introducing our new online resources for parents and educators: - American Identities. Exploring works of American and Latin American Art though sound and description. - Recorded Verbal Descriptions of New York City Landmarks, A fun way to discover New York City with your children! - Social and Independent Living Skills Curriculum through the Arts to explore table etiquette, fashion and public speaking with your children. - A hands-on art workshop will be offered to children. www.artbeyondsight.org www.nybeyondsight.org When: March 21st, 2009 Time: 11.30 am- 1.00pm Where: NY Institute on Special Education (Auditorium) 999 Pelham Parkway North (Entrance is on Astor Avenue) Bronx, NY 10469 Please call or email by March 16, 2009 Please state how many adults and how many children will be attending.

Preface: This is just a reminder. Although I document the HPS world here, this is actually my personal blog. The below post is entirely my personal opinion. I don’t know about you, but this stimulus plan and the surrounding debate is giving me a headache. It’s pulling at me on several levels, torn between the large unmet and ignored needs in our country, and the hefty price tag. We all have our special interests, our pet issues and not surprisingly, mine is funding for medical research. I’m always going to push what I think is in the best interest of HPS research. I have to. No one else besides those impacted by HPS really cares. The sad reality is so many aspects of our economic development life have been so woefully attended to during these past years that the needs are great. The science community in general is a perfect example. The repair that needs to be done to certain programs is huge – as the oversight needed to ensure money isn’t wasted. The government tends to be good at was...

Just when I thought I’d documented every detail of my personal life for the insurance company and the social security administration, Thursday and Friday more forms arrived from both entities. I almost burst into tears right there at the post box. I could tell from the thickness of the insurance company envelope that it wasn’t from the insurance company telling me they’d reviewed everything and believed me and would approve my disability benefit. It’s the same with the Social Security Administration – a large yellow, thick envelope just wasn’t a good sign. The insurance company irks me because these are the same forms I’ve filled out twice now. I called them on Thursday to find out why I hadn’t heard anything and discovered nothing had been done with my paperwork. So, I’m hoping this is an error, but I’ll be calling Monday to make sure. The social security forms are another matter. It’s just one of the hoops you’ve got to jump through for them. But, it irritates me that in this 15 odd ...

Although this isn't an HPS fundraiser, this is an announcement about a fundraiser for our friends at the Coalition for Pulmonary Fibrosis. The funds will help overall pulmonary fibrosis research. I'm posting it for that reason, but also because I want to give a big kudoss to the country stars who are helping out. Although just as many people die yearly from pulmonary fibrosis as from breast cancer, somehow pulmonary fibrosis doesn't get anywhere near the support from corporations or celebrities. I don't begrudge folks fighting breast cancer anything. They've had huge successes and I think that's great. Hats off!!! But, some days, it really gets to me that pulmonary fibrosis doesn't get more attention. I have several theories about why. First, I think it's because most people impacted by pulmonary fibrosis are older. Second, I think we've done such a good job of educating the public about the evils of smoking that the average person assumes if you hav...

I watched this romantic comedy back in December when I wasn’t feeling so great. It was the perfect movie to watch when you need a comical distraction from your not-so-comical life. The story is about a woman named Jane who is not only a sort of perfect, type A personality, but she’s also the sort of person who puts everyone else’s needs above her own. That’s how she ends up being a bridesmaid 27 times. She’s got it down to an art form. It’s during a particularly funny scene where Jane is a bridesmaid at two weddings on the same night – and goes back and forth between the two weddings all night – that she peeks the unwanted attention of a newspaper reporter. And, of course, he’s suddenly interested in this professional bridesmaid at the worst possible time – when Jane is asked to be the maid of honor for her sister. The catch is her sister announces she’s engaged to the man Jane secretly has a crush on. As for the family friendly issue – to be honest I don’t remember any sex or languag...

To continue with the Netflix reviews, another movie I watched recently isn’t a new film by any stretch – but if you’ve never seen it, it’s a good film. And, it’s family friendly. It’s so clean that my World History teacher in school was able to show it in class. I loved it then, and I loved it the other day when I watched it again. The name of the film is A Man for All Seasons. If I weren’t so lazy I’d look up when it was made, but it was definitely before the late 80s when I was in high school. Again, this is a King Henry VIII-related film. It’s about Sir. Thomas Moore, who essentially worked in Henry’s court as a lawyer. He had been a mentor of the King when the King was young, and later became one of the King’s closest advisors. The trouble was Sr. Thomas was a man of his convictions – and he had strong convictions – especially on the topic of the King’s divorce, religion and the law. The story is about how he tried to withdraw from court – to vanish happily into the countryside for...

The following is an article from CNN that Donna found. Dr. Gahl is much loved in the Hermansky-Pudlak Syndrome community. He's our primary investigator at the NIH. I thought you all would enjoy reading about the other project he is overseeing these days. http://www.cnn.com/2009/HEALTH/02/03/undiagnosed.diseases/index.html?eref=rss_latest

It's Friday - you know what that means! The 100 People Search update. This week was a very productive week on the 100 People Search. We added three new HPs'ers to the HPS registry. That means we've got 36 HPS'ers left to find. Great job everyone!

Below is the text from a weekly letter sent out by the American Thoracic Society about what's going on in Congress of interest to the lung community. As you might imagine, now that the party in Washington is over, the claws have come out and the nitty-gritty is well underway. There are several items of particular interest to the ATS - and to us. For now I've got a lot to do today so I'm going to save my personal comments for later. Consider this just an FYI post to keep you in the loop. Double Bonus: Health Insurance Expansion and Tobacco Tax Increase This week, President Obama signed into law legislation that will reauthorize and expand the State Children’s Health Insurance Program (SCHIP), a joint state and federal program that provides health insurance to approximately seven million children whose families cannot afford private health insurance, but do not qualify for Medicaid. Thanks to this new legislation, the program will be able to serve an additional 4 million chil...