Living on the frontlines

It's been a busy week! We just added another HPSer to the patient registry. This puts us at 84 to go on the Hundred People Search. 

Busy day - today we added three new HPSers to the patient registry. This puts us at 85 to go on the Hundred People Search. 

Yesterday we added a new HPSer to the patient registry. This puts us at 88 to go on the Hundred People Search. 

It happened. On June 11th, I turned 40. I remember when I turned 26 what my brother said. “Now your closer to 30 than you are to 40.” He then laughed a lot. As I turn 40, I’m being told that 40 is the new 30. I hope that’s true.  Turning 40 seemed like something I really should blog about. It’s a big birthday for anyone. It’s a really big one for me. When I blew out my candles at my 30th birthday party, my HPS diagnosis was still pretty new. I’d been to NIH and I knew I already had a lot of inflammation in my lungs. They told me the pulmonary fibrosis was soon to follow. When I took that big breath and blew out those candles, in my mind I wondered to myself if I’d ever have a 40th birthday, and if I did, if I would still be able to take a deep breath and blow out candles.  So, reaching 40 seems like a big deal. I should have something profound to say. I should have some deep words to share.  The thing is I don’t. I’ve been putting off even writing about turning 40.  It was a

A team from the HPS Network attended the American Thoracic Society’s (ATS) International Meeting in Philadelphia in May. ATS is a medical society for physicians and researchers interested in respiratory disorders.  The Network once again had a booth in the exhibit hall where physicians could read more:  http://www.hpsnetwork.org/en/news/2013-06-26/hps-network-attends-american-thoracic-society-international-meeting Photos from the HPS participation in ATS:  Ashley Appell, Jasmine Rodriguez, Angie Roman and Carmen Camacho at the ATS patient Breathing Better event.  Entrance to the ATS event Doctors picking up their registration badges.   HPS Doctor Dinner at ATS  Working on putting up the booth. 

We were so excited that the screening of RARE got covered by the show daily at DIA. They've even had to add seating for the screening. 

Donna Appell, President and Founder of the Hermansky-Pudlak Syndrome Network, was awarded a fellowship to attend the 49th Annual Meeting of the Drug Information Association (DIA). The 2013 class of fellows included 19 representatives from patient advocate groups. They were chosen through a competitive application process. More than 75 patient advocates applied for read more:  https://www.hpsnetwork.org/en/news/2013-06-25/drug-information-association-awards-fellowship-to-appell

Yesterday we added three new HPSers to the patient registry. This puts us at 89 to go on the Hundred People Search (HPS). 

The NIH's NCATS program is working to help link researchers with potential therapies sitting on their shelves with medical conditions and pipelines to make them available. Sometimes a molecule is developed and studied for one problem and turns out to be ineffective. That doesn't mean that molecule might not be helpful to some other medical condition. As an extra bonus, much of the research work has already been done on these potential drugs.  We don't know if this will ever help a disease like Hermansky-Pudlak Syndrome or Chediak-Higashi Syndrome, but you never know. We will  never know without a program like this!  Check out this very short and easy to understand video about the program.  https://www.youtube.com/watch?v=LRFhWqEULgI

Recently the Hermansky-Pudlak Sydrome Network attended the international meeting of the American Thoracic Society. It is one of the biggest medical events we attend all year. There were approximately 14,000 lung doctors and researchers gathered together in one place. If you want to read more about the meeting, I suggest visiting www.hpsnetwork.org . We will be posting the news stories there. But here is the place for me to share a few personal reflections. Even though the vast majority of the attendees are not working on Hermansky-Pudlak Syndrome, it was still very comforting to me to see so much research being done on lungs. There’s a saying, the rising tide raises all boats. Better understanding of the lungs, and lots of different lung diseases, could someday yield a clue, or a technique, that might benefit patients with HPS. For example, I know that some of the Cystic Fibrosis researchers are working on a way to deliver gene therapy to the lungs. While our therapy might be

Today we added a new HPSer to the patient registry. This puts us at 92 to go on the Hundred People Search! 

Goodsearch has made it easier for you to book travel reservations and earn money for the HPS Network at the same time. They have consolidated all of the travel-related merchants on goodshop into one place at: http://www.goodsearch.com/travel-category/coupons When you book with one of these merchants going through this website (and you're registered as supporting the HPS Network) a percentage of your purchase price is donated to the HPS Network. Merchants include many major hotel chains, as well as sites like Priceline, Expedia, Orbitz and Travelocity. If you're planning a trip, check it out! 

We've added a new person to the patient registry. This puts us at 93 to go on this year's Hundred People Search.