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Huntington's Disease Youth Organization

Destiny’s Enroll-HD visit

HDYO has more information about HD available for young people, parents and professionals on our site:

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May 31, 2015

HDYO News

A trip to DC was an adventure indeed. My family and I had the opportunity to participate in another study for Huntington’s Disease called ENROLL. The study takes place nationwide and tests those at risks for Huntington’s as well as some care-takers. My family and I are always willing to get involved in any way that we can so this was the perfect opportunity for us all to get involved together.

We live about 2 hours away from where we did the testing, so the staff put us up in a hotel so we wouldn’t have to get up super early. We arrived around 4 in the afternoon the night before and had time to do some sightseeing and walk around. I personally loved looking at all the bulk foods at the local Safe Way and looking at the cute little down town buildings! The next day we were scheduled to be at the hospital to start testing around 9 AM. The morning started off with some breakfast and a little chit-chat before we would begin going over some simple paperwork and proceed to the testing.

The testing consisted of some surveys, cognitive testing, blood work (if this freaks you out, my sister, who normally passes out, survived! Shocker, huh? It’s just a little blood work that is huge to put your  case together so it can be used effectively for the testing), and motor skills. The testing is made to make you feel a little frustrated (especially if you’re competitive, like me! But it’s a lot of fun!). If you don’t like long days, this is perfect for you because the testing went by super quick! It was only 2.5- 3 hours to test 3 of us!

The staff there was simply amazing! They were super down-to-earth and made sure it was a great experience for us all. After all the “hard work” of the testing they even treated us to lunch! And another really cool thing, they paid our way there and back as well as some compensation! Not only are you treated like kings and queens, but you’re also making a bigger difference in the research world than you may think! 

Destiny

So, I said this trip to DC was an adventure… Well, Destiny, testing doesn’t sound like quite the adventure to me, you may think, but the way home sure was! So, I’ll just share this little story just to add a little humor to the post. It was a beautiful day outside and our tummies were full of delicious pizza when we started to head back to our vehicle. I was feeling great until I heard a clang. “You’re kidding me!”, I yelled. My uncle looked right at me and we both knew that we NEEDED to get the key back. But how? Can you guess what happened? Let me give you a hint… I was standing at a crosswalk waiting to go across. I decided this would be the perfect time to try to get my key on my key chain properly so it wouldn’t fall off. It wasn’t too smart to be standing a few inches away from a manhole… Yep. My key fell in the manhole. I lost all hope. That key was GONE.

My pop pop looked down into the manhole and saw the key, but how on earth were we going to get it!? The metal plate definitely wasn’t coming up with our super human strength… So my uncle went back to the pizza restaurant we just ate at and our waiter came out all smiles and was determined to get that key out. My aunt was ready to call the town personnel to have them open up the manhole because there was no way we were going to get that key out. Time seemed to pass like turtles crossing the road… With that, I replied “with God, all things are possible!” And what do you know! Seconds later, my key was fished up with a hanger! My family and I sure left relieved and full of laughter!

So maybe you don’t want to sign up for that much adventure, just don’t have your key out by a manhole and you’ll have a great experience! ;) Seriously though, what if just one more case study is what they need to come to one more conclusion? (Btw, your name isn’t recorded at all and your information is kept private through the whole study) YOU could be that case. YOU could be the hope that is brought to others.

Destiny Hand
News Team Reporter
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