Living on the frontlines

Anthony Creer and Janet Perez are organizing an event in the Chicago area Sept. 12th. You two go! Here are the details: Where: at MCM Pub 3907 N Cicero Ave. When: Saturday, September 12 from 8:00 pm to 11:00 pm Why: To raise money for the Chicago Puerto Rican Parade outreach project next year What: Karaoke and raffles If you live in the Chicago area and would like to support the work of the Hermansky-Pudlak Syndrome Network, this would be a fun event to attend. And,, if you’re a family affected by HPS, it would really help out to have you at the event. Our financial supporters need to meet some of the people they’re helping.

Here's the latest Hundred People Search update - we added one new person to the HPS registry last week. That puts us at 41 to go on the hundred people search. Thanks to the Puerto Rico conference, we are now ahead of where we were at the same time last year. Keep up the great work everyone, and don't forget - let me know when you do anything to help spread the word about HPS!

This afternoon I peeked out the window at my back porch. The back porch is usually a total disaster. It has ivy that grows everywhere at a rate you wouldn’t believe. Keeping it well trimmed is a big job, even for such a little patio – and I’m allergic to the ivy. I used to tank up on Benedryl and just suck it up and cut it back, but these days even 10 minutes at the task not only starts to affect my breathing, but pretty much wipes me out for the day. I can keep up a few flower pots, but that’s the extent of my green thumb. I’d asked the landlord to suggest someone to hire to cut it back. I’d put out a few feelers, but every plan for some help has fallen through. Then today I looked out and little elves had come and cut back all the ivy, pulled out a particularly large and particularly sick bush – I could just cry. I’ve felt like the neighbor that doesn’t mow their yard. The patio has been such a source of embarrassment. I’m so grateful to whomever has come along and helped me out.

Has anything ever happened in a split second that later you wish you’d handled differently? That happened to me this week while working at Homers, and I’m sorry to report I didn’t do what I knew I should have. Homers is a non-profit coffee house run by the Christian Businessmen’s Association in our area. Needless to say a lot of people spend time at Homers that are made aware of it through the contacts of the association. Living in a very, very “red state” area, it follows that many of the people that spend time at Homers don’t share my political view of the world. Who cares. We might not vote the same way, but in general, they are well-meaning nice people and I enjoy being there. Last week a guy came in that I’ve seen at Homers a few times, but don’t really know well. It was the day that Sen. Kennedy’s death was announced, and this man was being quite loud about the fact he felt the world would be a good place without the Senator. I bit my tongue. There are some people that are worth

If you’re in need of a little laughter, this comedy was a riot. It’s not a new film. I think it came out in 2000 – ironic given the current economic situation in our country now. The story is about your typical, upwardly mobile, upper-middle class family that seems to have it all. They’ve got the big house in the suburbs, the car, the life sort of speak, and they’re in competition for even more. Plans go wrong, however, when they both find themselves without a job. They try everything to stay afloat and keep up appearances, but ultimately, they turn to a life of crime. In the end, however, they turn their newfound criminal know-how back on the corporate criminals that caused them to lose their jobs in the first place. The very last line of the movie had me belly laughing for a while. I give it four out of five spoons.

Here's another photo from the Puerto Rican conference. Unfortunately, I don't know who all these folks are, but they're a great looking bunch!

Photo from Dr. Camona - here he is with another cute baby!

Photo submitted by Dr. Camona

Pictured above: Adam, a very cute baby, and Dr. Carmello Camona-Rivera from the NIH. Congrads Puerto Rico! I haven’t posted yet about the HPS Puerto Rico conference. I wasn’t there personally, and so I’ve been holding back waiting for more details. But, Dr. Carmelo Camona-Rivera, one of the researchers in Dr. Gahl’s lab, shared photos with us. I’m giving the folks in Puerto Rico a little time to recover from the conference. I know when you’ve put on a conference, it drains you and you need a chance to catch up with your regular life. The conference was a huge success! We enrolled 45 new HPS’ers on the patient registry – perhaps the most at one time ever. In addition, there were 73 HPS’ers in attendance that had been to one of our events before – and of course everyone’s family. There was also a separate session for medical professionals and 45 attended. The week also brought many outreach opportunities speaking at various clinics and hospitals. HPS also got a lot of coverage in the Pu

Below is a tidbit that was in the newsletter of the National Organization for Rare Disorders (NORD). It's from the Department of Health and Human Services. I'd argue the problem is actually bigger than this report suggests, as it only looks at the individual insurance market, and most Americans get coverage from employers. As a result, people like me are not included in this report - people who find themselves unable to afford COBRA, and in order to maintain coverage, essentially must rid themselves of all assets to ensure long-term care of some kind. How is that in the government's best financial interest? Here's the tidbit: Millions Denied Coverage Because of Pre-existing Conditions The U.S. Department of Health and Human Services (HHS) has published a new report, “Coverage Denied: How the Current Health Insurance System Leaves Millions Behind,” that examines the insurance company practice of denying coverage to Americans with pre-existing medical conditions. A recent

Again, for the sake of record keeping, here's another update. Once again I'm having trouble with the skin around my stoma. There's another sore there, or it's still the last one - I don't even know anymore. Yesterday afternoon I had five code browns - which pretty much ruined getting anything accomplished. It's so irritating! And, of course, the more time you change the ostomy, the worse the problem gets. Now the area around my stoma is just raw from pulling off appliances. It's sore - but thankfully not so sore I can't stand it or anything - just sore enough to let me know it's there. The skin infection on my boobs is back too - and it has been better for months. I should go back to the dermatologist, but geesh, I really don't want to. I'm trying all the things they had me do last time - and I had an extra tube of the antibiotic they gave me last time. Last time one tube did it (but NIH gave me another when I was there - and I kept it.) It d

Need a little comic relief? I thought this film was pretty funny. Either that, or I just really, really needed to laugh. The story is about a manager at a call center. His company decides to outsource his entire section’s duties to India. They’re firing everyone but him. His job is to go to India and train his replacement. He arrives in India totally not interested in India, it’s culture and certainly not happy about the job. Much of the humor is based on cultural misunderstandings. I do wonder how the movie would go over in India as it sort of portrays India as being backward. From the people I’ve met that have gone there, this isn’t universally true. But, if the main character wasn’t impressed with India in the beginning, he does have a change of heart and finally begins to take an interest in Indian culture and all it has to offer. I give it four out of five spoons.

Here's Dr. Kantor, a low vision doctor specialist from Wichita who presented at the KC NOAH event. He was a very nice guy!

We HPS'ers want to thank the NOAH folks in Minneapolis St. Paul. They've agreed to put out some HPS brochures at their end-of-summer picnic. We really do appreciate it! Just in case any readers are in the area, here's the info on the event. You can also check out the NOAH site too for other albinism-related coming events - www.albinism.org . Twin Cities End of Summer Pot Luck Picnic Mark your calendar for the Twin Cities potluck albinism picnic! When? Sunday September 13th at 11:00am Where? Beards Plaissance on the west side of Lake Harriett in Minneapolis. What? Please bring a dish to share and beverages for your crew. And, of course, sunscreen. :-) We’ll supply plates, utensils, condiments, etc. There is a toddler park on the grounds, but if you have some fun summer games bring those along as well. We’ve reserved the picnic shelter, so we’ll plan on gathering rain or shine. Questions? Contact Sue at gsmckinley@comcast.net or 952-830-1515.http://www.minneapolisparks.org/do

This is not a movie to watch after a bad day. It’s a tear jerker, but oh so good. The story is about a little boy growing up in Nazi Germany. His father gets a promotion and the family has to move from the home they loved in Berlin to a place far away in the country. What the boy doesn’t understand is that his father’s new job is running a concentration camp. The boy is very lonely as there aren’t other children to play with. He wanders off and eventually makes a friend of a boy in the camp about the same age. They play checkers etc. through the wire fence. The ending is unexpected and I won’t give it away. The movie has a great moral point. It’s easy to justify something as long as it’s happening to someone else. One thing I liked about the movie is that to me, it really felt like Germany. I don’t know where it was filmed, but one thing I remember fondly about Germany is that it was always green. Even in the dead of winter when all the leaves were gone from the trees, it was still gre

I got one of my Taste of Home newsletters, and it had this recipe in it. Ironically, I'm working on the HPS Network cookbook and had on my list today to type in the exact same recipe - it's exactly the same. I got it from a co-worker, only now I can't remember which one. In my office about two years ago they took on the American Heart Association as the charity of the year. They had a chili cookoff contest. Employees paid $5 and got to sample from all the entries. All the money raised went to AHA. It's a great fundraiser idea. Each pot of chili had the recipe next to it copied off so we could have the recipes too. Great idea! Before anyone asks, yes, I always tried to get the company to adopt the HPS Network as a charity, but never had any luck. The American Heart Association was a client of the company. This is where my emotion kicks in and I feel so awful and politically incorrect - but it did make me sad when we raised about $5,000 for AHA, and to them it's proba

There is a group of HPS'ers that are planning to attend the NOAH Adult weekend in Orlando. This is a NOAH event, not an HPS event, but Donna Appell is planning to be there. It's a great opportunity to not only get together with the general albinism community and socialize, but also to see old HPS friends in the Florida area as well. Here are the details, but check out the events page at www.albinism.org . NOAH Adult Weekend 2009 Registration Information Available Here Friday, September 25 — Sunday, September 27, 2009 Fellowship, presentations, discussion groups, and field trips for adults! Adult weekend is a time when adults with albinism can share their experiences, ask questions and not feel like they are under a microscope. Where: Holiday Inn and Suites8214 Universal Blvd. Orlando, FL 32819Cost: $82.00/night + tax (currently 12.5%) Registration Costs: NOAH members’ discount registration fee is $30 per person. Non-members pay $40. The price includes: Breakfast (if staying at

Here's another pic for Lyra's fan club - I think she's developing a lot of admirers here. I think we adults like to watch the kids with albinism because it gives us a glimpse at our own childhoods.

This is Lyra. You've seen her on the blog before at NOAH bowling events etc. Her mom just put up a blog entry making the case for teaching duel media - both print and braille. She did a great job. Check it out at www.parentofachildwithalbinism.com . Now, I've got to tell you about this photo of her daughter Lyra. Lyra is quite the little musician! I stuck my head in at daycare at lunch during the Kansas City Mini NOAH Conference and Lyra came over and gave me an unexpected hug. Sooo cute! Then she sat down at this toy piano and started pounding on it, but singing at the same time. She sang "Twinkle, Twinkle Little Star," the ABC song, "Row, Row, Row Your Boat" and several others - she had a whole concert worked out. It was so precious!!!!!

I have few little luxuries in life, but I got a great entry subscription rate for Taste of Home magazine, and well, since I always end up buying it at the grocery store eventually, this option seemed cheaper. Grin! At least that's how I justified it in my mind. I love the magazine! Today I got the magazine's e-newsletter, and there was an article in there with tips for bake sales. I thought they were great, and if you look in the comments section, there's even more fundraising ideas. So, if anyone is feeling inspired to bake for the cure, check it out. And if you do have a bake sale, please let me know about it. The magazine also has a column monthly where they feature a recipe and a cook who is cooking for a cause. We could always really use the publicity, even in unexpected places. Here's the link: http://www.tasteofhome.com/Community/Cooks-Who-Care/Bake-Sale-Ideas?pmcode=IJHKA10T&_mid=243701&_rid=243701.220400.147704

The United Healthcare Foundation, a 501(c)3 organization, is offering medical grants to patients 16 years old or younger who currently have commercial medical insurance, but whose families are facing significant financial need paying for care that is either not covered, or not completely covered, by their existing medical insurance. The grants range in amount but can be up to $5,000 per family. There are a number of exclusions. To find out more or to read about eligibility for the program, go to: www.uhccf.org . Thanks to Fran for passing along this information.

Before I knew about HPS, I was a very active volunteer in the Adventure Fitness program, run by Camp Fire USA, here in Kansas City. The program is for blind and visually impaired kids. It gets them active and teaches life skills. As someone who never played a team sport, got picked on so much in gym class that even now as an adult going to a gym is an emotional, sometimes tramatic thing, I really believe in this program and cause. I don't volunteer now as much for two reasons. First, my HPS duties keep me so busy. Second, I don't drive and right now I can't afford cab fares to get to events. I get tired of always having to call around and beg for rides and feel like I'm imposing on people. I know, I know, you've got to speak up and say you need a ride, but to be honest, constantly begging when everyone knows you need a ride just gets old. If I weren't so busy with HPS, and if my health issues were a little more predictable, I'd probably suck it up and be mor

We HPS'ers would also like to thank the Albinism Fellowship of Australia. They also have a conference coming up and have agreed to distribute HPS brochures. We so much appreciate the support. I know we do have several HPS families in Australia, and I thiink two Chediak-Higashi families. They are so far away it's hard for them to participate in the Network, but they are there - and as we've learned over the years, where's there's one HPS'er, there are always others. Grin! Again, thanks so much for the support. I have to add on a personal note that Kim with the Fellowship is also one of the moderators of the albinism international yahoo group. She has always been a great friend and supporter of ours. We really do appreciate it. Here's the information on the conference - I know I have at least two regular blog readers in Australia, so I wanted to share the details as well. “Shining the Light on Albinism: Brisbane 2009 AFA Conference” PDF version for printing Da

We HPS'ers would like to thank the organizers of the upcoming Connect Albinism event in Northern Ireland. When I found out they had an event coming up, I asked them if they'd be willing to share our brochures on HPS, and they readily agreed. We really appreciate their willingness to help us out. When Carmen and I were at the recent hematology meeting, we met a hematologist from Belfast who told us he had three HPS patients, and another from a nearby town that had one. I know I have Irish ancestory on my Dad's side - as do several other HPSers. We also have a handful of Irish families on the database, so HPS definately occurs in this population. We really do appreciate the help building awareness about the syndrome. Below is the information about the upcoming event. Connect Albinism Weekend in Northern Ireland Part of the RNIB NI Vision 4 Life Project (Funded by the Big Lottery) Share Holiday Village, Lisnaskea, Co. Fermanagh, Northern Ireland ( Map ) 11th-13th September 200

We HPS'ers want to send a big thanks to the organizers of the Cleveland August get together - see below. Brochures are on the way to Cleveland to be shared with attendees. We very much appreciate the help of all of those with albinism - HPS'ers or not - to get the word out about HPS and the importance of getting diagnosed. We can't do it on our own. Everyone's help means a lot to us. Here's the info on the Cleveland event, just in case you missed it. WHEN: Friday August 21st from 6:00-8:30pm WHERE: Cleveland Sight Centerwww.clevelandsightcenter.org1909 E 101st St, Cleveland, OH 44106(216) 791-8118Accessible via the RTA WHAT: Socializing, information and fun! Presentation by Angelique Stubblefield, PhD, MPH, BSN, RN onthe social and emotional aspects of albinism Come meet others from the albinism community Refreshments will be served RSVP: Call Venetta at 216.375.9351

Karen T., our regional coordinator in North Carolina, was telling me this evening that she had given HPS brochures to the various specialists her husband had to see recently. Although she wasn't there for herself, you never know when one of these docs. might encounter a patient with HPS. Just goes to show - every new doctor could be a potential act of outreach.

Silvia, an HPS mom from North Carolina, reports that she shared HPS brochures with her daughter's vision teacher. The vision teacher reported that she has several other students with ocular albinism of Puerto Rican background. Since we know that about five of every six people on Puerto Rican background with albinism have HPS type 1 or 3, the likelihood some of those other kids also have HPS is pretty high. Hopefully their families will follow through with HPS testing. If not, at least they are now aware of the syndrome should any complications develop. Silva also shared brochures with her local doctor's office. Way to go!!! That's how we'll get the word out!

I asked members of the HPS Network to share their acts of outreach with us, no matter how big or small. Elizabeth, an HPS mom from Iowa, shares that she has shared information about HPS with several online groups she belongs to, including a yahoo group for people from India that have albinism, and another for families that have adopted kids from Asia that have albinism. I happen to know it's working. We've had several new arrival adoptees get screened for HPS. She's also shared information about HPS with her local school for the blind. It's these sorts of acts of outreach that we need! Lets keep at it and get the word out about the importance of HPS screening for people with albinism.

The HPS Network Puerto Rico will host the next HPS Network Puerto Rico conference Aug. 22, 2009 at Club de Leones de Mayaguez in Mayaguez, Puerto Rico. Doors will open at 8:00 am and the event will conclude by 4:00 pm. For more information, call: (787) 313-4643.

Yesterday would have been Aurora’s birthday. She would have been 75 years old. Last year she passed away from pulmonary fibrosis as a result of Hermansky-Pudlak Syndrome. She’s one of the, if not the, oldest person on record with HPS type 1. Aurora was never even diagnosed with HPS until she was already in her 70s. She’s what they call in medical research, an outlayer – someone who doesn’t meet the norms of a given population. We love those outlayers. We hope that as more people get screened for HPS, we’ll find more of them. The HPS community owes Aurora a huge debt of gratitude. She traveled to the NIH to participate in the Pirfenidone trial and dutifully took her study medication to the last day of her life. Upon her death, she ensured that her body would be made available to the researchers at the NIH to continue to study HPS. She was worried about and cared for the younger generation of people with HPS and wanted to leave us the gift of a better life. So, when her daughter, who is

Although our online store isn't up and running exactly, we do have HPS Network unbrellas for sale. They are $10 each, plus shipping. I'm guessing shipping to be about $3.00. I just bought one and got it in the mail and I love it. It's red with the HPS logo on it and it fits very well even into a small purse - great to have along for instant shade! Support the work of the HPS Network and buy an unbrella - for sunny or rainy days.

Registration was a busy place!!!! Thanks to all the volunteers that helped out!

This morning I got an e-mail from Karen T. It's now official - we'll be doing two craft events this fall/holiday season - one at the HPS Network Christmas concert and one in North Carolina. There's even a possibility that we'll be able to do a third event. But, to do this, we need things to sell! Anyone wishing to support the work of the HPS Network can participate and send in crafts for sale. Funds go to cover the operational expenses of the HPS Network. Some of these things include our participation in medical meetings to generate awareness and interest in HPS research, efforts to help families seek HPS testing, our conferences for patients, doctors and researchers. We really do a lot with a very small budget. Our idea to start selling crafts came from the observation that in the HPS community many of us face profound economic challenges and can't donate money to the Network. Yet, many of us have a lot of talent. Thus, this is a way to use our talents to further t

Here Mike, the President of NOAH, poses with a cardboard cutout from the Wizard of Oz.

Although this is my personal blog, I try to avoid politics in general as I want to use this as a tool for building community in the HPS world, and not division. Even so, I feel myself working up to a post on the health care debate. I can't seem to even watch the news without steam coming out of my ears. I'm not even mad over opinions different than mine, or the debate etc. I'm mad at all the people and the interest groups on both sides who are getting in the way of the debate with misinformation campaigns, and manipulative campaiign techniques. Look - if things were so rosy this wouldn't be an issue to start with. I, for one, want to hear the actual proposals. I want to hear the actual debate - pros and cons. I want a national dialog. We have the opportunity to not just copy the Europeans or the Canadians, but to create something new if we could quit tripping over ourselves. In that spirit, I found this tool. I thought I'd share - it isn't perfect, but I'm t

Monday night my friends Tina and Megan met me at MiRachito for dinner and then we went to Pick'in on the Patio, then back to my place to hang out for a while. I had a ball. Here's some pics to give you all an idea of what this event is like - just a friendly little jam session. Tina has the guide dog, named Rosa, and Megan is the one in the pretty skirt. I want that skirt!

I often whine about fatigue, and this has been one of those weeks where the fatigue has been getting the better of me. I have been productive, but only for five or six hours of the day. I've been going to bed early, and waking up late. I get up to take a shower, and fall asleep literally getting dressed. It's pitiful. I've been spending way more time at Homers only because as tired as I feel, I can't lay down at Homers and thus I can force myself to accomplish something. My house is a pit! I also have had the runs for a week and a half now. In my first hour at Homers I was in the ladies room three times. My acid reflux is acting up and my joints hurt, although thankfully it's more of annoying ache so I can cope with it okay. It isn't too bad. I sang a duet this week at Pick'in on the Patio - and the whole time I was singing I was thinking, "Lord, please keep me from letting out a belch while I'm singing....." I've had to really make sure th

These two are just too cute! Here they're playing together in the little kitchen in the child care room. It's sort of neat to me as I never knew other kids with albinism when I was growing up except for my brother Ryan, of course.

As everyone was registering for the conference, I went and spent some time with the little ones in child care. I knew I wouldn't see them much of the day to get pics. And lets face it - we all love to see pics of these cuties - who wants to see pics of a bunch of adults? We're boring. Here Brylie is facing off with her mom. She was very much wanting to go explore the hallways with the stroller.

Below is a press release from the organization Under the Same Sun, a group advocating on the international stage for those with albinism in the region of Africa where they are being hunted down and murdered for their body parts. More signatures are needed on the petition, link below. I've left out the graphic photos. FOR IMMEDIATE RELEASE As Albino butchery increases, Tanzanian courts abandon prosecutions WARNING: Extremely graphic photos of a dead, mutilated child are attached Vancouver BC, Canada - August 6, 2009: As the slaughter of albinos continues, promises from Tanzanian President Jakaya Kikwete and Prime Minister Mizengo Pinda that the killers would be brought to justice swiftly have not yet been fulfilled. Now the Kahama and Shinyanga High Courts which have been holding trials for 4 of the suspected killers of victims with albinism say they have run out of funds. THESE TRIALS HAVE NOW BEEN SUSPENDED UNTIL FURTHER NOTICE. For Tanzania's 170,000 albinos, there is an incr

This past weekend we had the mini conference for NOAH in Kansas City. And yes, I have a TON of photos - did you have any doubt?

The HPS Network News is now in the New York office and the mailing labels are being run. If you haven't updated your address with the HPS Network lately, make sure your information is up to date so you get a copy!

Here we are at Veronica's house eating the pizzas we've made. Here's Bebo (sp?) enjoying his pizza. He was my little buddy for the evening. He was explaining to me the wide world of wrestling characters.

I must confess, although I’ve been fighting it, I was in the dumps last week. I couldn’t help it. I couldn’t help but feel somewhat sad about our news from the NIH. Although I’m grateful the trial will continue, and I know we must press on to fill it, I can’t help but think of those in the trial who aren’t stable and who need answers now. These trials are fraught with an emotional component. Currently, there is no FDA-approved treatment for pulmonary fibrosis. Thus, even those that are on placebo there aren’t really a plethora of other options. Still, I know that we were all hopeful that the drug would be found to be a great treatment, and that we’d all be placed on the drug for the duration of the study. I’m grateful that the researchers didn’t find that the drug doesn’t work. I keep reminding myself that could have happened, and that would be even more depressing than this situation is – but I don’t think it’s fair to not acknowledge what many of us feel. I’ve been hard on myself thi

Our little gathering while I was in New England wasn't as big as we'd hoped, but hey, no biggie - we'll do it again. Here we are at an Italian restaurant where I had really wonderful lobster ravioli - something you don't find much of in Kansas. Photo by Frankie the Cat.

Photo by Frankie the Cat.

Dr. Collins has been confirmed as the new Director of the NIH. I was very pleased. I happen to be a fan of his book, have had the honor of meeting him a few times - and somehow it makes me feel better to know that the guy in charge at NIH is truly interested in genetics and has actually heard of Hermansky-Pudlak Syndrome - grin. Here's a story about it below. Senate confirms new NIH director (AP) – 2 days ago WASHINGTON — The Senate on Friday confirmed Dr. Francis Collins, a scientist who helped unravel the human genetic code, as director of the National Institutes of Health. Collins led the Human Genome Project that, along with a competing private company, mapped the genetic code — or, as he famously called it, "the book of human life." He was awarded the Presidential Medal of Freedom, the highest civilian award, but may be more widely known for his 2007 best-selling book, "The Language of God: A Scientist Presents Evidence for Belief." To read the full story,

Below is a news story about Lyra, one of my local little buddies with albinism who made her local paper. If you click through to the newspaper's story, there's a darling pic of Lyra! A face in the crowd Family fights myths associated with albinism Lyra Thompson, 3, of Edwardsville, was born with albinism, a genetic condition that causes a lack of pigment in the skin, hair and eyes. Lyra’s family is hoping to dispel myths about albinism and help Lyra live a happy, self-confident life. By Nicole Kelley August 6, 2009 The routine is simple. Before Lyra Thompson can leave her house, sunscreen must be applied and sunglasses, and a hat must be in place. She’s 3-years-old now, and the routine has been instilled in her from an early age. But it’s not an overprotective mother or the fear of skin cancer that has Lyra being so careful. Lyra is a child with albinism, a genetic condition that affects the amount of pigment in her skin, hair and eyes. Her lack of pigment has given her white,

I have to say, this has been a very tough week in HPSland and I'll blog more about that later. I need to get to bed as tomorrow in the Kansas City NOAH event! Yahoo!!! I did want to let you know that this week we added two new HPS'ers to the patient registry, putting us at 87 to go on this year's Hundred People Search challenge (HPS).

As many of you know, this summer there was to be an interim analysis of the results thus far in the Pirfenidone trial at the NIH. The statisticians have met, and the news is mixed. The statisticians declined to review the data thus far because we haven’t met our recruitment goals for the protocol and we’ve had several people drop out of the trial. As a result, the statisticians believed that any results they came back with would indeed not be statistically relevant or accurate. Those of us who have been in the trial for a long time were hoping to get some answers about how effective Pirfenidone has been in this trial, and we were hopeful that they’d decide to put us all on the drug. Unfortunately, that isn’t going to happen. I think we can’t help but feel disappointed. The trial will continue on as it is now, although some of us who have already been in the study for more than three years might not have to return to NIH as often. This news is disappointing to say the least, but it coul

This little girl came and joined us in the pool - isn't she a cutie too? Grin! She shared her toys with Seldon and Kelsey.