Wednesday, April 13, 2016

World Kidney Day Advocacy

I know, it's been WAY TOO LONG since I last posted an update about Stephen.  I apologize to anyone who has been checking the blog periodically waiting for an update.  I had a few friends gently nudge me to get back to blogging about Stephen's journey, because I wasn't really sure anyone was still interested or cared since most of the time, everything is just status quo.  But I finally realized that even if no one is reading this, this blog has meaning to me and hopefully one day to Stephen as well.  After realizing I really did need to "get back on the horse,"  I wrote a really long update that included everything we've been up to since Halloween (the last time I posted anything) and a whole diatribe about what this blog has meant to me and what I hope it will mean to Stephen when he's older.  I wrote it while I was on an airplane on the way to Puerto Rico in February with Bill for his annual sales/work trip.  I had meant to publish it when we landed, but when we got there, our internet was super spotty and it took us a while to get it all worked out and by the time I remembered I had wrote this long blog update, I lost it.  The whole thing got deleted because it didn't automatically save without a connection to the internet.  A total bummer!  And....I just haven't gotten off my butt or gotten it together to re-write it.  So, that's where we are today.  Although, as you can see, I did slightly update the blog to make it a little easier to read and navigate.  

There is something though I really wanted to share with everyone; Stephen and I participated in a really cool event a couple of weeks ago on World Kidney Day.  I was extremely blessed to have been asked by the American Society of Pediatric Nephrology (ASPN) to speak during a Congressional briefing on pediatric kidney disease.  The World Kidney Day event theme was, "Kidney Disease in Children: Act Early to Prevent It!" and took place in the Capitol Hill Visitor's Center.  Stephen, Bill, and Bill's Mom Tish, came along with me, and I spoke with other pediatric nephrologists and a pediatric nephrology researcher about a number of specific issues surrounding pediatric nephrology. how Medicate and legislature can affect pediatric patients, and more specifically for me, what it's like to have a child with kidney disease.  

I have done some advocacy efforts in the past on Capitol Hill, but typically have less than 5 minutes to try to get my story and point across to Hill staffers.  However; in this setting, I was able to spend almost 15 minutes sharing our story.  It was a wonderful opportunity and one that I'm grateful to have had.  And best of all, Stephen was there and when I asked him to join me at the podium at the end of my speech, he told everyone in the crowd that the best part of getting a new kidney is growing big and strong!  He totally stole the show as you can imagine!  And was totally unprompted to respond with such an awesome answer!

Here's a link to a recording of my part of the briefing.  I'd love it if you could take the time to watch and listen to my speech (it's about 13 minutes in length) to help keep the conversation going about these issues.







2 comments:

  1. Carrie PasquarelloJune 24, 2016 at 12:34 AM

    Wow ! You did such a great job at the Congressional briefing on pediatric kidney disease.

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