Living on the frontlines

Here Donna is being honored by the American Thoracic Society for her time on the Board of Directors.

Remember I said we eat peanut and butter jelly sandwiches on the road to save money? Here's proof - grin. We were at the Hyatt looking for a meeting room. Donna had to run ahead because she had to speak, but we were just worn out. So, we stopped and had a little picnic right in the middle of the Hyatt Hotel.

We did it! Congrads to our nameless challengers, and to all of those who chipped in to help us earn the three-to-one matching grant. Way to go! This challenge was a great idea. If anyone else would like to challenge your fellow HPS'ers, please call the Network office and talk it over with Donna.

I thought the graphic art for the show was pretty.

These are two doctors from Chili that came by the booth. They had never heard of HPS. They were very interested and asked if they could take a photo of us. We said sure! If we can take one of you! Grin! I love that scarf!

This week we added another new family to the HPS registry. That makes 93 more HPS'ers to find this year.

Here's a little HPS Outreach lore - this is Qui Qui Biscuit. At the last conference in Puerto Rico Carmen was along for the trip. They were doing a lot of medical outreach and Carmen needed something to take notes. She was staying with her sister and asked for a notebook. Her sister teaches elementary school and handed her this notebook. Carmen said oh no, I can't go around to doctors and take notes in a children's notebook. Tough luck, her sister responded. That was all she had. So, Carmen and Qui Qui went all over the place taking notes. And on this trip, every important contact and follow-up task got written down in Qui Qui. We'd say to eachother, "What does Qui Qui say?"

I just wrote an e-mail to my local doc telling him I was sending over my NIH results etc. and explaining why I haven't been in to see him. I told him I was doing great. So, I think the universe decided to punish me for thinking I'm doing really great. I've had such bad stomach cramps and constant runs for several days now - although it's finally getting better. I've got a temp today and have been sooo tired. I owe a ton of people e-mails, but please be patient with me. I've got so much to do still from Chicago and I've got to get healthy becuase I'm supposed to leave again.

Here Ashley is posing for a pic with three researchers we met at the Northwestern University alumni event at the American Thoracic Society. Dr. Gochuico went to Northwestern and thus we got invited to this party. These ladies are researching pulmonary fibrosis.

Fran passed this along to me. I'm just posting to make everyone aware in case anyone is interested - unfortunately, the deadline is really coming up fast. Also keep in mind, however, that most of these types of programs are annual. If you can't do it this year, perhaps next year. VSA arts, in collaboration with AFI-Discovery Channel silverdocs Documentary Festival to launch the first VSA arts apprenticeship at the International Documentary Conference from June 15-20, 2009. The VSA arts apprenticeship provides unique insight into the world of documentary filmmaking for emerging artists with disabilities, age 18 and above. Deadline to apply: Tuesday, June 2, 2009. Selected VSA arts apprentices will have travel and accommodations covered by VSA arts and AFI, and receive mentoring by AFI Silver's Education Coordinator Matt Boratenski. For more information and to apply please visit www.vsarts.org . http://www.ucpeople.org/2009/05/internship-opportunity-for-aspiring.html

Here's our little booth in action. We really need to find a grant to pay for a new booth. Note the cookies in the front. They work very well. Everyone comments on what a great "educational tool" they are - the chocolate chip cookies for the "normal" platelets and the vanilla ones for the Hermansky-Pudlak Syndrome platelets. Funny how we go through the "normal" ones faster - no one wants the HPS platelets. Grin!

This was our table at the PAR dinner. I was interested in the painting that's on the wall. I'm sure it's probably mass-produced hotel art, but I had wanted to get a closer look at it. The water has such a brilliant blue. It isn't easy to mix or get such a perfect blue. I wanted to get a closer look to see if I could see paint strokes or raised paint in the image, or if it was just a mass produced easy-to-identify knock-off.

Here Carmen is looking at Donna's plaque. The thing is when I took the photo I thought she was texting. Grin! I didn't realize until I got the photo on a computer screen that she was looking at the award. HA!

This photo is from the Public Advisory Roundtable dinner at the American Thoracic Society. Courtney and Ileen are getting ready to give Donna an award recognising her two years as President of PAR.

As many of you know, I'm trying to learn braille - again. I know if I could just master it, I'd benefit. I can't tell you how much I wish I'd been able to give my speeches at ATS with Braille notes. Because of timing issues, I had to cut my speeches at the last minute as I was giving them. It's so hard just to keep track of where you are in the talk, keep from sniffing the notes throughout the talk in order to maintain something approaching eye contact with the audience - and yet not lose your place. If I could have been skimming with my fingers the whole thing would have been much more successful. At any rate, I did manage to keep up with my Braille on the road. It's been since I've been home that I've been getting lax. Bad Heather, bad, bad. I found this Web site on the links of my friends, the Palmer Family's, blog. This site is geared towards kids. The braille is visual - however, I'm finding that a good method for me is to combine visual lea...

Pictured here is John Walsh, President of the Alpha I patient group. He's been a mentor to Donna and a friend to the HPS Network. We've known him for years through the American Thoracic Society. Alpha I is another, somewhat rare, genetic disorder that can affect the lungs and the liver. It can cause COPD, even in people who have never been smokers. Several years ago when Karen T. was with us at ATS for the first time, she was trying to remember who everyone was as we introduced her around. She remembered John Walsh by nick naming him "Alphadog." The name stuck. So, partly as a joke and partly as a sign of our affection for him, we had a T-shirt made for our friend, Alphadog!

Disclaimer: I try to be honest about my HPS life – but sometimes it requires being….well, let’s just say don’t read this if you have a weak stomach or are eating. I’ve been doing so great these past few weeks. I was very worried about how my stamina would hold up on this trip, but I did okay overall. I think it helped that I had some down time built into the trip. One day I did have to stay in bed. I had a bad night and was up 14 times to go to the bathroom. Between all the peeing I was doing trying to keep hydrated (I also had a UTI going and so was drinking cranberry juice) and all the diarrhea I was having (probably because of the aforementioned cranberry juice) – well by morning I felt like crap and there was no way I was moving. My runs were much improved from the average on the trip, however. I’ve been trying to figure out why. I have a few theories. Frankly, I missed a lot of doses of my medications. Traveling gets your schedule all out of whack. When I’m home I take my meds out...

By popular request, below is the poem that Ashley and Donna wrote and read to all the researchers at the ATS research dinner. “The ATS is an awesome place to meet the very most gifted, They work all day, from dawn to dusk to see that we are lifted. What they care about is how we breathe and whether we look pink No matter if its lung disease, critical care or sleep,..I think. With stethoscope or microscope, they work to save our air Regardless of the thanks they get, they worry how we fair. They try to find the answers in an unrelenting way Ingbar, Wright and Curtis, they all have things to say. The Foundation is new science; it has surely hit a stride We were pleased to give it money, with encouragement and pride! And from the PAR we’d like you to know, they way our hearts do feel, With all your help and knowledge, we know our lungs will heal.”

This is a photo of all the patient advocates that serve on PAR, and Ashley - grin. They represent a variety of lung diseases from Pulmonary Fibrosis to Pulmonary Hypertension to Alpha I.

Here Ashley is talking to Mishka Michon, CEO of the Coalition for Pulmonary Fibrosis, before the research dinner. I wanted to get to know Ms. Michon better at the meeting, but didn't get a chance. She's somewhat new so I don't know her as well. I did notice that she loves hats. She had a whole collection of the cutest hats! I also love hats, but wish I looked better in them. They are handy for the sun though! But, Ms. Michon looks great in hats. I kept wanting to go over to her and say, where did you get that hat?

This photo was taken at the PAR Symposium. This is different than the Better Breathing PAR event that was open to patients. This was an afternoon-long symposium open to doctors or other American Thoracic Society members. Every year the Public Advisory Roundtable organizes a scientific symposium of its own. This year the topic was pulmonary fibrosis. Several researchers presented research findings about pulmonary fibrosis. Dr. Gochiuco , our doctor from the NIH, gave a presentation on what they've learned so far about the lung disease of Hermansky - Pudlak Syndrome. It was a great exposure opportunity for us because several of the world's experts on pulmonary fibrosis were in the room and heard it. Here, Dr. Gochiuco poses with two past presidents of the American Thoracic Society. On the left is Dr. Martin. It was his vision that started PAR and incorporated patient voices into the inner workings of the American Thoracic Society. It was pretty innovative of him and has meant...

Letty, one of the adults with HPS, posted this link to the HPS adults yahoo group. It's a program to help those who are not getting Medicaid with the cost of drugs. It's only for families in New York, but as many of you are in New York, I thought you might benefit. Thanks for the tip Letty! https://nyprescriptionsaver.fhsc.com/

I was looking online to see if the ATS Foundation had posted the video from the research dinner. I didn't find it, but I did find this video that was shot several years ago. It's of Ashley and Donna telling their story and saying thank you to the American Thoracic Society. It's cute. I thought you all would enjoy it.

Nearby the convention center in San Diego and within walking distance of the Marriott and the Hyatt, is a little shopping area next to the water. It's a tourist trap, but it's cute and the balcony at the PAR dinner had a nice view of it. We only had one night in San Diego when we didn't have to be at a function. Donna, as a member of the Board of Directors of the ATS, was invited and went on a cruise around the harbor. The number of people who could go on the boat was limited, however. By that time, the rest of us were so tired that while we would have gladly gone on a cruise, we were just as happy to stay behind at the hotel. Ashley, Richie, Carmen and I went to dinner at the shops seen here, and then we just poked around the little stores. Carmen bought a few things for her family. And, then, we saw it. The perfect little San Diego memory for Donna - it was a little hanging sign that said, "I don't suffer from stress. I'm just a carrier." We laughed s...

I LOVE this picture. The lighting was so good. This is Carmen and Ashley at the PAR dinner for lung disease advocates and patient speakers.

These photos are of the dinner guests at the ATS Foundation dinner before the doors were opened. It was a very nice dinner. They had an open bar before and waiters walking around with fufu food on platters. The balcony was also very nice and the weather was perfect outside. Little did these folks know they were about to be charmed by the talented duo of Donna and Ashley - evil grin!

This is just a snap I happened to grab of Ashley sometime in San Diego. I just thought the lighting etc. looked especially nice. Ashley is becoming my adopted little sister - grin. I'm so glad to be getting to know her better doing all this traveling. We need more "girl time" on these trips. Grin! I wish I knew what Ashley was looking at in this pic - something above her I guess.

Before I left on the trip, I was going through one major cleanout project. In an effort to comply with down right silly requests from social security etc., as well as a need to do a major junk purge to make some storage room for working at home, I've been going through boxes of stuff I didn't even know I had. I about died yesterday when my neighbor locked herself out and wanted to use my phone. Of course I'm happy to let her use the phone, but my apartment looks like a bomb has gone off in here, and it's going to take me weeks to finish this project. I was so embarrassed. I haven't finished the dusting because I'll dust for 15 minutes and suddenly I'm wheezing. The mask doesn't help. This evening I pulled out a bag of papers, carefully wrapped in plastic, from the bottom of a box. It's tons of stuff my mom evidently saved from my childhood. There are family photos, baby pictures, report cards, drawings, mother's day cards - and then there was...

This is one of the awards Donna and the Network were honored with during the week. This one was presented at the research dinner.

There was a lovely balcony outside the dinner and the sun was going down. Here's Ashley posing with her dad. Normally Richard doesn't come to these events, but he came this year with Ashley's brother Richie. It was a big help to have Richie in the booth the last part of the show.

Here's Carmen all dressed up for the research dinner. The lobby outside the dinner had really strong sunlight - bad for our eyes but great for taking photos.

This is another picture taken by the official show photographers. It's of the doctors trying to get upstairs to the sessions. I think they sort of look like a bunch of ants. Grin!

Speakers at the Public Advisory Roundtable’s Breathing Better with the ATS which focused on how patients with lung diseases, critical illnesses and sleep-disorders can maintain quality of life. Donna was the chair of this event as part of her PAR duties. This is the one event that is open to the public.

Former ATS president David H. Ingbar, left, checks out a research poster in the San Diego Convention Center. Dr. Ingbar worked with Donna on the PAR symposium on pulmonary fibrosis. These poster sessions are like a grown-up science fair. It gives doctors a chance to present their research even if they don't get to do it in a session. Sometimes they do both. This photo came from the ATS press room.

Here Ashley re-reads the poem that was such a hit the night before to Dr. Gochuico, our pulmonogist from the NIH. Here we were all attending the PAR dinner for lung disease advocates.

Donna Appell , R.N., chair of ATS PAR, and her daughter, Ashley, accepted the ATS Research Program’s first-ever Breathing for Life Award on behalf of ATS PARs 15 member organizations. Although both Carmen and I got shots of this, I think the official photo is sharper than ours. This was one of the big moments of the show for Hermansky - Pudlak Syndrome. Donna has served as the President of PAR, the public arm of the ATS, for the past two years. PAR, as an organization under her leadership, received the first ever Breathing for Life award. In Donna's typical fashion, her personality charmed the crowd. She and Ashley had written a poem about lung disease researchers that Ashley read at the podium of this huge, important dinner with more than 600 attendees. Everyone was completely charmed. The rest of the show people were stopping Ashley to meet "the girl they heard about that read the poem at the research dinner." This photo made the front page of the show daily. But...

ATS Attendees pick up bags bearing the 2009 conference logo after registering for the meeting. This photo is from the ATS press room. I didn't get many of these types of shots this year because I learned last year the show photographer gets way better ones than I do. I post them only to give readers a flavor for what one of these meetings is really like. If you want to know more about what it's like to attend one of these meetings as a patient, you should ask Carmen, Izzy or Karen T. All have attended this meeting now and can tell you all about the experience.

Attendees at a poster session in the San Diego Convention Center’s Sails Pavilion. This photo is from the ATS press room.

At Monday afternoon’s ATS President’s Symposium, NHLBI Director Elizabeth G. Nabel talked about how the federal economic stimulus package is changing the financial state of scientific research. Indeed the NIH issued a press release about several new grants to research pulmonary fibrosis. I posted that a few days ago. The only worry about this funding is that it's temporary. I hope those of us who advocate for scientific research funding don't get lazy with this temporary influx of dollars. Instead, I hope that the science that comes out of this funding push only helps to prove why we need for funding for medical research. This photo is from the ATS press room.