The HLHS Dad Goes to Washington (Part 1)

As you may have read in a previous post, I had a very special opportunity to attend the Congenital Heart Legislative Conference in Washington DC on February 25-26.  I was really excited about the opportunity to speak with my legislators about CHDs and how funding research could really save lives!

As Day 1 began to arrive it became obvious that the weather was determined to throw a monkey wrench into my plans.  On the day before I was scheduled to fly out, we actually got a little bit of snowfall here in Charlotte.  Now it didn’t even snow a half-inch and none of it stuck to the roads, but here in the Carolinas that amount of snow is equal to the apocalypse!  Schools closed, people didn’t go to work, the grocery stores were packed.  Me?  I went to work.  After all, I’m a New Englander…so for me this was just an average Tuesday.  Still, I’d be lying if I wasn’t concerned about my upcoming travel since they cancel things at the drop of a hat here.  Luckily, though, the flight was still on and the roads were nice and clear. I had everything packed, including my leave-behinds and some CHD Awareness colored socks (I love crazy socks):

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I had a good 50-minute flight into DC, picked up my bag and used Uber for the first time to get to the hotel.  I had a credit due to being a UNCC alum, so I put it to good use.  What a great experience…WAY better than a taxi!  After a few issues with my room key (the first 2 didn’t work) I managed to get a little down time before registering for the conference and grabbing some lunch.  At registration we were given these cool pins that I immediately put on and it actually started up a lot of conversation in the elevators, which was great:

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I jumped right into sitting with a table full of strangers and it was great to meet people from all across the country: I met a heart parent from right there in DC, a heart family from Florida, a family who unfortunately lost their little one (kudos for them for being there to advocate…so brave!), and I also met this guy:

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This young man is Jacob and he’s from San Diego.  He was born with HLHS and received a heart transplant at a young age.  He was a very cool guy and had an amazing story and outlook on life.  I got to spend some time hanging out with him and his Aunt on this trip and I’m glad I had the opportunity.  I am going to blog more in depth about him and the work he’s doing, so keep an eye out for that!

So anyhoo, we kicked off our training, which included discussions on how to tell our story, decorum on the Hill, how to use social media, and lots of presentations from guests.  These included a CHD survivor and a heart parent (her son was the Darth Vader kid from that car commercial a few years ago).  We also saw a very interesting presentation from the NIH regarding CHD research.  It was really fascinating and I am going to be blogging more in depth about it soon (I know there’s a lot of “see me later” stuff going on), but here’s a little preview:

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It’s very interesting to see that there’s some idea about the genetic causes of CHDs, but the truth is – and I’m sure we all know this – we just don’t know.  That’s why the NIH needs continued funding to study CHDs!

Next up was an equally-interesting presentation from the CDC that focused on CHD facts and their financial impacts on healthcare.  This really captured a lot of it:

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$5.6 BILLION to care for CHD kids…and that was in 2009!  Imagine what it’s costing us now.  The CDC is currently trying to gather CHD across the life-span, so birth into adulthood, so we know what our kiddos can face growing up and we can allocate enough resources to continue helping them survive and thrive.  A big focus of this lobbying trip is increased funding for the CDC.  They are currently budgeted for $4 million to study CHDs, but the truth is they need $10 million to do it correctly and with the biggest impact.

With that, let’s take a look at the overall focus of the Legislative Conference:

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For the rest of Day 1, we focused on learning these 3 issues, so we could ask our legislators to support them.  The first is to continue supporting NIH research for CHDs.  The second is that increased funding for the CDC to properly conduct its research.  The final point has to do with Department of Defense funding.  Currently the DoD has a pool of money that is given as grants towards peer-reviewed research.  A physician, for example, could petition this group and receive some money towards his or her research.  The great news is that CHDs are now on that list for the program!  This is really awesome because I know there’s lots of great work going on throughout the country, whether it be work in the interstage, 3D printing, etc.  We wanted to ask our legislators to help keep CHDs on the DoD list.

So those were our marching orders: go forth upon Capitol Hill and speak passionately with our legislators about CHD research!  We may only get 30 seconds to speak, we might get 15 minutes…we might meet with the legislator, we might meet with his or her assistant.  Either way, whatever opportunity we would get would be a powerful one…because our stories cannot be denied…and neither can our passion.  But that would wait for Day 2.

Day 1 was in the books and was a whirlwind day full of travel and education.  It was great meeting new people and I was so glad I came on this trip.  We all hoped to make a big impact, and who knows…maybe one day soon our story will make its way here:

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About Chris Perez

My name is Chris aka HLHS Dad: I’m married with 3 sons. I love photography and the New York Yankees. I’m an admitted pizza snob and amateur balloon animal maker. Every now and then you can catch me being serious…but most of the time I’m quoting random commercials or lines from Pee Wee’s Big Adventure.

Posted on March 2, 2015, in awareness and tagged , , , , , , , , , , , , . Bookmark the permalink. 2 Comments.

  1. What a nice looking young man you met….Jacob Kilby huh? Hahha. We were so happy to have a friend there and you made getting to know you super easy. (This is Charity by the way.) I just LOVE this blog. Truly needed and I’m sure appreciated by many dads out there.

  1. Pingback: HLHS Dad goes to Washington D.C.; Part 1 - PCHA

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