Carol Silva, daytime and afternoon edition news anchor for News 12 Long Island, won the first media award from the Hermansky-Pudlak Syndrome Network for her coverage of the HPS Network’s Christmas concert event. Her story not only generated awareness about Hermansky-Pudlak Syndrome in the general community, but it helped to make the 2011 Christmas Concert the most successful yet. Silva attended the HPS Network’s annual gala dinner at the 19 th Annual HPS Network Conference to receive the award.
Carmen Camacho, regional coordinator for the HPS Network in New England, is hosting a BBQ for HPS families and friends May 26 th at 2:00 pm. Hot dogs and burgers will be provided, but guests are asked to bring another dish or drink to share with the group. To RSVP, contact Carmen Camacho at: camachoc2000@yahoo.com .
I saw this article on the twitter feed for the Pulmonary Fibrosis Foundation. While this patient does not have Hermansky-Pudlak Syndrome, I thought the story was inspiring - both for people like me who will likely one day need a lung transplant, and for our HPS transplant heroes who already have their new lungs. This man received his lung transplant in 2009. He has made this 70-story climb twice since then! I can't imagine doing that, even before I had pulmonary fibrosis! It's very inspiring to me! http://brighton.patch.com/articles/double-lung-transplant-recipient-makes-second-70-story-climb-since-surgery
Registration area - HPS family catching up after a long year. Registration table - thanks to all the volunteers who get us all registered! HPS'ers meeting up for the first time - here are two first-timers talking to me in the registration area. For the first time, we had a session on Friday afternoon just going over all the information in the packet everyone gets at registration. Me talking to the session about things to help them get the most out of the weekend. Thanks to Joe Sipe for sharing his photos with me! He took these shots. It's so hard for me to concentrate on being a photographer when I'm worried about running the conference. I'm so grateful to those in the HPS family like Joe Sipe who are willing to share their photos!
We are very open about our meetings. We hold a business meeting at conference with the HPS Network board of directors, and anyone else who wants to come. These are usually members who are very involved in projects for the Network who have an interest in some of the business to be discussed. We have a good time. And, of course, it wouldn't be a Thursday night meeting without some dinner!
The volunteers work for days and days before conference getting everything ready. The Appell household is transformed into one big workshop! Welcome to the dining room/packet making area. Late, late at night in the HPS Network office. Everyone's HPS grandma- Ashley and Richie are so good to share their grandma with all of us. HPS Network Employee of the Month - the copying machine. I hate to think how many rain forests we're taking out with all of the photocopying. Perhaps in a few years we'll have a techie solution to save more paper.