Living on the frontlines

On Saturday, the ATS holds an afternoon event for patients with lung disease. This year Demetria and her husband Russel were able to join us too! It was so cool to have more HPS patients there. Next year ATS is in Phillly, so we should have a good turnout! 

I'll post a full story about this later. I've been a bit under the weather since I got home. I thought it was allergies, but now, I think it's something more. I'm debating about whether to go to the doc or not. I know, I know, I should got, but now it's been days and I keep thinking surely we're coming to the end of this crud! It needs to get better quick though! I'm back out on the road very shortly!  In the meantime, let the picture parade begin! (You all know how I am about my camera!)  As you see from the video below, the girls got creative while we were waiting for the booth to open. The ATS Center was located across from our booth. One of the guys in the booth put on some sunglasses and started dancing as they were practicing, so we headed over to give him a performance! These pics are the girls singing to the ATS booth staff, and Donna dancing! I got off easy - I had the camera! The power of the camera! 

It looks like the Boston Hermansky-Pudlak Syndrome picnic was a hit!

More pics from the 19th Annual HPS Conference - Sorry folks, I love posting a few throughout the year because it makes me look forward to the next conference! 

Tommy got some awesome pics from our trip into the city after the conference. It means so much to spend time with HPS'ers. Now that I'm so involved with organizing the conference, it's really one of the only times I get to just hang out! A special thanks to Jackie Falco, who played tour guide for us. Now, that takes guts!

 We are always trying to figure out how to make our conference more low vision friendly. One problem when you don't see well is you can't see the person across the room talking. Our dream team young adult technology crew came up with the idea of using a camera to film the person talking, and throw it up on the wall larger. It worked okay - needs some tweaking. They are so clever!   Attendees in the "Family Album" circle Saturday morning.   Dr. Ishii from Japan. He comes with Kyoko, who has HPS and leads the HPS group in Japan.   And a little dancing......  These photos are totally out of order - and I didn't take this one - I think Christian, Mervin's brother, did. It's off of the patio of the Appell apartment in Manhattan.  A view from our walking around the city in NYC. 

 Kyoko, Waleska and Kyoko's doctor, Dr. Ishii - Kyoko is an HPS'er from Japan. She's come to our conference for several years now. The language barrier is huge, but it just goes to show how much it means to spend time with people like you, especially when you're so rare and can sometimes feel so isolated. Waleska comes to the conference from Switzerland.   The HPS gang visiting Ground Zero in NYC.   It's our friend Yeidyly! Yeidyly is one of those HPS'ers that is a perfect example of how those with HPS can look very different. We aren't all blonde!   The HPS gang at Ground Zero Part of the gang posing for the group photo at conference!  These photos came from a variety of HPS'ers. Sadly, I got them a little mixed up and am not sure who's is who's. The photo credits certainly are not mine! 

All of these people have HPS, and all of them have had a lung transplant! While success would be never needing a transplant, when I was first diagnosed no one with HPS could even get listed. What a victory! 

We tried something new this year, an orientation session going over the various sessions that would be offered during the weekend. Next year we're thinking about a hotel tour! Things are a bit spread out at the hotel.