Monday, March 31, 2014

It is more than a conference

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 a conference. Most of us look forward to the obvious stuff – to seeing friends and making new ones; to dancing and fellowship and to learning something new about the science of HPS. Those are all great things about conference. I look forward to them too. 

Honestly, however, if that were all that the weekend was about, we would have to re-evaluate whether it’s in the best interest of the cure to have the conference every year. It takes about $60,000 to produce the event (and that’s with a lot of our expenses donated.) Is it a wise use of our limited funding? 

I argue yes! 

For those who were able to make it, your being there has helped our science. There is nothing so moving for researchers than to look out on an audience of us – hundreds of us – and know that we are counting on them to help us. Sadly, someday when someone finds a treatment, or a cure, for HPS they likely won’t win tons of awards or become famous. It won’t be like the guy (or the team) that cures cancer or diabetes. Thus, those personal connections that our researchers feel with us are important. Hearing our stories, seeing us with each other – it reminds them how important their work is to us. 

Many of our researchers work on multiple diseases and thus HPS competes for their time. Knowing that every year we are so anxious to find out what they’ve learned in the past 12 months probably also helps to urge along matters. 

Others work on animal models like mice or zebra fish and don’t get to see the humans they are helping very often, if at all. 

This year the number of researchers at the conference grew. We had a formal scientific workshop at the conference, as opposed to the informal science meeting we’ve had in the past. There were researchers and doctors walking the halls who might have never known about HPS before, but who possess an expertise we need to put the puzzle together. Sitting with all of you at dinner, dancing with you or listening to you in sessions helps them to understand how much we value and need them. 
I am thankful for the things you might expect that come out of conference. I’m thankful newly diagnosed patients have a chance to meet others who have known about HPS for some time. I’m thankful that people form friendships that end up being great sources of support. I’m thankful for getting to see everyone (although these days I’m so busy at conference I hardly get to talk to anyone). I’m thankful that the kids have a chance to meet one another and form lifelong friendships. I’m thankful HPSers learn about new science and new information to keep them healthy and to help them be better self advocates. 

But, it’s the impact on science – that elusive and hard to measure thing that happens – that makes it all worthwhile. 

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