Living on the frontlines

The HPS Network is a co-sponsor of a scientific meeting starting tomorrow called Fibrosis Across the Species. You can read the news story here . We are one of a nice list of sponsors.  I've been reading a book (will blog about it when I finish it) about what human medicine can learn from veterinary medicine. It’s more than using some lab mice to study human diseases. Sometimes veterinary researchers are hitting on solutions that could be applied to human diseases. That is the aim of this meeting.  If you follow the world of who is who in pulmonary fibrosis research, there are some “heavy hitters” at this workshop.  I’m looking forward to seeing what we can learn from our animal cousins. Hopefully this meeting will kick off some meaningful collaborations! 

One of the very exciting things that happened at this year’s HPS Conference was the Meeting of the Minds. You can read the news story about it here . This, however, is my take on it.  The Meeting of the Minds was the first ever formally organized meeting for HPS researchers held at the HPS Conference. There is some HPS history behind this. For many years researchers have met amongst themselves on Saturday afternoon while we all enjoy sessions. We’ve provided them with a room and a lunch, but it was informal.  In the past we’ve offered to organize even an HPS researcher conference in conjunction with the Network conference. If it could be useful, why not? We would benefit from the economies of scale on room rates and meeting room rates. Many of our researchers are already devoting their weekend to the cause because they are coming to speak to us. We’ve already paid for their travel. Until now, they’ve preferred the informal setting. Last year, however, they asked if they could make

We've added two new HPSers to the patient registry - this puts us at 98 to go on this year's Hundred People Search - H.P.S. 

Carmen has been a dear HPS friend of mine for many, many years now. She is really doing great things for HPS and HPSers in New England. I'd urge you to get involved! I'm posting the Network news story. It also includes the speech Carmen gave where she shares her HPS story.  Read here:  

One of the things I think people look forward to most about the HPS Network Conference is finally meeting someone else who has walked in their shoes. 

Okay, when I update the blog, it picks up whatever photo I posted last on social media. While I love my brother and niece, I posted that photo ages ago. I just haven't been posting many photos. So, here are a few change it up a bit. I'm not entirely sure who took this one. It might have been Ashley Appell. If it's yours and I'm not giving you proper credit, I'm sorry!  This was a cool thing Matt and his friend that helped with conference IT set up. It is so those of us with crappy vision could have a shot at seeing who was talking across the room. I loved it! 

Today we were able to announce that the HPS Network was honored by an award from the American Thoracic Society. Needless to say, we are over the moon. You can read more about the award here .  To me, as someone with Hermansky-Pudlak Syndrome, the award meant a lot, above and beyond all that it means to the Network. It meant that the community of lung researchers and doctors recognize the unique challenges the HPS community encounters.  I must be careful to not seem ungrateful to all of those who have stepped up to help us over the years. There have been many and too many for me to begin to list here. Still, sometimes I'm surprised who is missing from that list.  HPS is one of, if not the, most common genetic disorder among those of Puerto Rican heritage. Yet, major celebrities and civic organizations have paid us little attention over the years, often focusing on more common disorders such as cancer or diabetes (both worthy causes - don't misunderstand.)  Still, when I