Living on the frontlines

The 21st Annual HPS Network Conference has come and gone. What an awesome event. It’s hard to believe it was my 12th conference! I have several things I want to blog about from the event (and you should see the notebook with things I intend to blog about but never seem to get to….I’m going to need a new notebook soon!).  That being said, I wanted to start out with a personal THANK YOU to everyone who was able to make it to New York. You have no idea what your being there does to push things along for the cure.  I know it isn’t easy getting to New York. It’s expensive. It takes fundraising and scholarships for many. It means missing work or school or finding caretakers for other responsibilities. In short, it’s not easy!  Some of us just can’t make it. I totally understand that and in no way mean this as an admonishment if you couldn’t be there. I get it – don’t worry.  But, for those who were able to make it, THANK YOU.  The HPS Network conference is more than just

The 21st annual HPS Conference is behind us, which means it's time to start the year's Hundred People Search (H.P.S.) over again. For the last year, we added a total of 66 new HPSers to the patient registry. That fell short of our record by five.  This might not sound like a lot, but for a disease many of us were told we couldn't have because it is so rare, it is. Also, consider that this is more than one family diagnosed a week. Gladly, we help more families than this get tested every week. Many more test negative and can go away happily knowing HPS is something they need not worry about.  Let me be clear. I would never want anyone to have HPS. It's my hope that we find the cure and none of us have to have it. However, having HPS and not knowing it can be so dangerous! Accurate diagnosis is so important.  That is why we issue the Hundred People Search challenge every year. It's up to us - the membership of the HPS Network - to be the voice to help others get

Here's a big kudos to Donna and Jasmine who did a TV interview on TelecareTV right before the annual conference. Rare Disease Day was tough this year for me (as the social media person) and the office as it fell right before our annual conference. The timing couldn't have been worse to make the most of the day.  So, thanks to these two for making this happen. (And more posts on other Rare Disease Day activities HPSers did to come!)  Here's a little write up on the HPS site about the show, and a link if you want to watch it.  https://www.hpsnetwork.org/en/news/2014-03-16/hpsers-raise-awareness-for-rare-disease-day-on-telecaretv

As usual, I"m so behind on blogging. This is something I really wanted to get up. We tried to do some live streaming from conference for the first time this year. Well, we ran into some unexpected technical difficulties, so much of the streaming didn't work. Luckily, perhaps the session I was hoping would work the most did somehow live stream and the HPS Network was able to archive it for future viewing.  This is Nancy and Rebecca, two HPSers that have had lung transplants, talking about their experiences. They talk about what to expect through the evaluation process as well as pre and post transplant. It's something anyone with Hermansky-Pudlak Syndrome hoping to have a lung transplant, or hoping to support someone through lung transplant, ought to see. Obviously they couldn't hit on everything in 45 minutes, but it's an awesome overview of what may be ahead.  For many of us (and possibly me) lung transplant may still not be an option. We need better treatment