Living on the frontlines

Every year the Tillmans work their magic with photos set to music and video clips. Here's the first offering for the 2009 HPS Conference - lots of familiar faces!

Yahoo Tommy - great job!

Congradulations to Karen and her team of walkers/fundraisers that participated in The Human Race in Greensboro, N.C. I'm sure Tommy took pics so when I get some, I'll post them. The team raised more than $2,000 for the HPS Network! Wooo Hoooo!

If any of these items belong to you - call the HPS Network New York office. If anyone could help pass this on to the folks that came from Puerto Rico, I'd appreciate it. 16th Annual HPS Network Conference Lost and Found Item #1 - Gray zippered hooded sweatshirt with glasses in the pocket Item #2 – Black Leather Jacket with Puerto Rico Lanyard and key in pocket Item #3 – Tortoise Shell Glasses in hard brown case Item #4 – Royal Blue Children’s Back Pack

How do you know that you have influence in the world? When you can look at three grown men, one of them an ex-New York City cop, tell them that you want them to dress up like superheroes - tights and all - and dance around the room in front of 260 odd people -- and they just agree. Wow! Donna certianly does have some super powers! She also did a great job finding the right superhero music for each super hero to strutt their stuff. Superman, Batman and Spiderman joined us for dinner!

We split conference attendees into three groups - adults with HPS, parents of children with HPS and spouses, family and friends of those that have HPS. This is the session for those with HPS. It gives everyone an opportunity to ask questions or share concerns they might be afraid to share with the other groups. We HPS'ers have issues that sometimes we don't share in front of family. Likewise, sometimes our family and parents need their own private place to share concerns and ask questions.

Mervin and Ashley hold up one HPS gene, and one unaffected gene - they are carriers in this game!

Here Dr. Brilliant uses pool noodles to illustrate autosomal recessive inheritance patterns. It was a great way to teach about different genetic inheritance patterns. Very easy to see and understand - great idea!!!! The pool noodles represent genes - one color the HPS genes and one color the same gene without an HPS mutation.

Here Waleska and Julie chat and Domingo watches something across the room while everyone else writes down what happened to them in the last year on a note card. Later they share events of the year with the group.

Here's a pic of some of the kids at the HPS conference. You can see they've made their own superhero symbols. Way to go kids!

Here's another one of my most prized pics from conference. This is Victor, the first person with HPS to get a lung transplant. He's five years out from his transplant. And this is Janet, our most recent transplant recipient. What a great photo to see them together!!!!

We are so blessed to have such a great team of doctors and researchers working on HPS. Here they are meeting with one another at the HPS conference. It's a great informal setting to share ideas about the latest research and where research should be headed next. We are so blessed that our researchers so openly share their work with us at conference during their presentations. I don't post much about the specific scientific presentations because much of what they discuss with us isn't yet published. After all their work, I'd really hate for them not to get the credit necessary in the scientific community that would allow them to keep going. I will say that some interesting discoveries were made this year about the lung disease - while we haven't completely cracked the puzzle, it sounded to me like they were narrowing in on it. I left the meeting extremely hopeful. I was also very pleased with the robustness of the conversation among the docs.

I really am getting so I hate doing these health updates – but I need to document and it beats doing it every day. For the first time in history I missed sessions at the HPS Conference. I missed THREE sessions – it almost killed me. I even missed Dr. G’s session which I REALLY wanted to hear because she was updating us on what the NIH has learned from those who have donated lung lavage fluid as well as what they’ve learned from explanted lungs. I also missed the Lessons Learned session and the closing session. I was massively fighting off fatigue at conference. And, Sunday morning I went through several ostomy pouches. I was having a hard time getting one to stick. Monday after conference I saw Dr. Seward. He had an idea to try for the ostomy bleeding and I’m doing a little of my own research now – we’ll see. This weekend I went through two weeks worth of pouches in two days. It wasn’t even that there was a lot of bleeding. It just seems that at a certain point the skin is so irritated

Ladies, I'm sorry, I'm getting so I can tell you apart in person, but I can't in photos - I can't hear your voices on a photo! Grin! So, I'm not sure, is this Candice or Crystal?

"If you walk in the footsteps of a stranger, you'll learn things you never knew you never knew."

Here Carmen is translating for Donna at the opening session. We usually don't hire translators for Friday night because the session is only an hour and the translators are very expensive. Unfortunately, one of this year's conference snafus was that our translators didn't show up. We typically offer translation services for the conference. Spanish-only speakers are given headsets that they can wear and hear the presentations translated into Spanish. I don't know what happened - but what can I say? Any time you organize an event something is bound to go wrong somewhere. We do apologize to our Spanish-only speakers for the problem. If anyone can help me get the word out about that I'd appreciate it. I don't want our Spanish speakers to feel neglected. It wasn't intentional. The only bright spot - we won't have a bill for this service. Last year it ran $6,000! But, we'd rather have had the translators.

While everyone else was having fun at Champions, the two HPS boards of directors were meeting with one another.

Wow! Donna surprised me at the dinner with a frame of my own - this one with Superwoman - thank you Donna! But, really, if anyone in this group is a Superwoman, it's you. Photo by Frankie the Cat.

Since the theme of our conference was superheroes, it was only fitting to honor one of the biggest superheroes in the HPS community - Dr. Gahl. Frankly, we'd be no where with HPS research were it not for him. Donna made Dr. Gahl a Superman frame and here I am at the dinner presenting him with our Superman award. Photo by Frankie the Cat.

This came up on my google alerts for pulmonary fibrosis. Honestly, most of those alerts are sad - most are obituaries. But this one is a great story! It appeared in the San Francicso Gate. This person does not have HPS, but she's a double lung transplant survivor from 2007 - I don't think I could have ever pulled this off, let alone after a lung transplant. Just goes to show you what's possible. Here's the story: 1,200 climb 52 stories to raise funds Heather Knight, Chronicle Staff Writer Sunday, March 29, 2009 Sheila Sachdeva was a very nervous woman Saturday morning. She took a 30-second elevator ride to the top floor of one of San Francisco's tallest buildings and waited for her daughter, who was climbing the 1,197 steps, to join her. She waited and waited, growing from nervous to downright scared. She even had a doctor descend the stairs until he found her daughter, who was doing just fine. She was just taking her time because that's the prudent thing to do

This is one of my most prized pics of the entire conference. This is Janet and her husband Anthony from Chicago. Regular blog readers will remember Janet's story - she was the third person with HPS that we know of to get a lung transplant. Her lung birthday is the same as my birthday - June 11th. She's almost at a year post transplant. I'm so thrilled she was able to make it to conference this year so we could all meet her in person. Photo by Frankie the Cat.

Here's the film crew up close and personal. I kept trying to take a pic of them, and they kept trying to move out of the shot - hey guys, no really, I'm trying to take a pictur of YOU! HA HA!

Photo by Frankie the Cat.

This year we got a special room for registration which really did seem to help with the glut of people in the hallway. We also were selling T-shirts at conference. Frankie the Cat shot some photos of folks modeling the T-shirts and they should be for sale on the HPS Network Web site shortly - keep an eye out for them in the HPS Store! www.hpsnetwork.org . Photo by Frankie the Cat.

Photo by Frankie the Cat.

Here's another photo by Frankie! These are two kids, well hardly kids anymore, that have a parent with HPS. Christian is the son of Carmen, our board member. He's a huge help at conference loading and unloading things and pitching in whereever he can. Holly's mom is Karen, seen many times here before. Holly was the first HPS Network scholarship winner and she's a big help with child care - a.k.a HPS Camp.

Here Donna opens the HPS Conference with a look back at the activities of the last year. She also presents the conference theme - the Superheroes in all of us.

This pic is a bit small because it's low res. It's one of Frankie's and he's working on sending through some high res images. I just love this pic. It's Carmen, Waleska (who came to the conference all the way from Switzerland, and Ivette from Puerto Rico. Ivette is a bit of a superstar in the HPS community. She's one of the folks that was in the original HPS drug trial, and she's now in her 60s. She's such a sweetheart. Even though we can't speak directly to one another because of our language barrier, she alwasys smiles at me and goes out of her way to be friendly. She's just such a sweetheart.

Here's another pic from Frankie - these are some of our team from Puerto Rico. In the center is Richie, who serves as the President of the board in Puerto Rico, and in the pink is his wife Ivette. They've been working very hard on HPS issues in Puerto Rico.

Do you have something you'd like to see in the HPS Newsletter? Have you had a fundraiser in your home town, or have you done something special to help build awareness of HPS? I'm working on the Spring issue now - and am very hopeful we've cured our newsletter kinks. If you have an event that took place between the end of October and the conference, please let me know about it.

At the HPS Saturday night banquet, Ashley and Candice and Crystal (Angels in Voice) did a great job of singing about our conference theme this year - finding the superhero within you.

This is another pic from Frankie - it's Donna talking to Mervin. Look at the grin on Mervin's face!

I think I must have been having some sort of problem with my camera - almost all of my pics - even the ones in good light - turned out blurry. Thank God for Frankie, Joe Sipe and Tommy for being such great photographers because most of my shots didn't come out well. At this conference we had no fewer than three film crews. The one pictured here is Joe. He's from the Stanford Center for Bioethics. This group has followed Ashley and me for more than a year now. They've gone with us to NIH and have interviewed Donna and Dr. Gahl extensively. They have made a short film for use in medical schools - great exposure for HPS - and are now shooting a longer documentary that we all hope will have national broadcast. There was also a producer at this year's conference mostly doing background research for a peice on albinism. She was from 20/20 Primetime. And lastly, we had a teenager with HPS who is studying film working on his own project. We actually had to have a press room th

This is a pic care of Frankie the Cat - evil grin. His pics from the dance came out great - it's such a hard room to shoot in because the lighting is terrible! This is Ashley and Mervin dancing.

In our efforts to keep costs down, we serve dinner in the hospitality suite on Friday night. We get the food at cost from a nearby restaurant. I'm not sure how much longer we'll be able to keep doing this as we're growing so much we're bursting out of our event rooms.