6.27.2017

TIME OF MY LIFE: 4th HDSA Convention in Chicago

I had THE TIME OF MY LIFE AND A PERFECT  10 WEEKEND at the  Huntington's Disease Of America's Annual Convention in Chicago!!

It was my 4th. my sister Liz's 2nd, her husband's 1st, and my parents' 3rd convention and we all had a blast!

On Wednesday night they had a welcome lual for the National Youth Alliance and it was a great and fun ice breaker for everyone for NYA Day on Thursday!



Thursday was dedicated to the youth of ages 9- 29 for NYA Day! NYA Day is one of my all time favorite days of the year and this year exceeded my expectations! 



We had a researcher from HD Buzz come talk to us and he told  us that the gene silencing drug for HD is right now working effectively as it can in human trials and hopefully that next year it will officially work!! YAY YAY YAY!! THIS IS AMAZING AND BECAUSE IT WILL MEAN MY MIRACLE AND A CURE FOR HD! If that does not work out  there are way too many  trials going on now SO SOMETHING WILL CURE HD IN THE NEXT 2-3 YEARS! SO MY MIRACLE IS ON ITS WAY!!

At  NYA Day  we were  asked to create a superhero cape for some one who we look up to and it could either be a parent, a sibling, a friend, or a member of the NYA and we presented them at the NYA Talent Show on Friday  night! So  I chose my caretaker at convention, my best friend, my person, my other half, my like a sister for 4 years and the person who is breathtakingly beautiful inside and out and who has the biggest heart my Amanda and she chose me!! Ironically we were not sitting next to each other when we made our capes so we had no idea that we chose each other until the talent show and we both cried when we presented them to each other on Friday night!




 I went to an Exercise for HD Patients session and it was fun and very informative and now every week when my sister comes we are going to do the exercises that I learned about! My neuro Dr. Frank always tells me that there is no cure for HD you exercise so I try my best to walk a lot and now I am going to do my new exercises too!

On Saturday we had the research session then the NYA Awards Lunch then more sessions then the Gala!


At the NYA Awards Lunch I  was sitting next to Amanda when she told  she had to go up and give an award but little did I know that it was my award that my best friend  was presenting!! Amanda read an amazing  and emotional speech about me then she called my  name and I went up and received my NYA Inspirational Award and Amanda and I were both crying happy tears as well as the entire NYA!!  But the truth is that everyone in the NYA inspires me, makes me smile and happy, and inspires me to live with passion every day. and is very resilient!!!  Amanda later told my family and I that she never sat next  to us during research because she could not since she was going over her speech about me!!



The gala is always my absolute favorite night of the year! I truly lived in the moment with passion while drinking wine and dancing with my NYA family who are my best friends and my biggest supporters, caretakers, and helpers!!















I wanted to thank my sister Liz for reaching out to the NYA  when I was first diagnosed with JHD and she had no idea what else to do and  my friend Seth for having coffee with me and for telling my family and I how much fun convention is and that I would connect with others who understood me and my HD journey because going to conventions changed my life for the better and I WOULD BE NOTHING WITHOUT THE NYA!

I wanted to thank everyone in the NYA who wrote a speech and nominated me for my Inspirational Award  AND ALL OF YOU HAVE ALWAYS INSPIRED ME TO BE INSPIRING AND  I LOVE LOVE LOVE AND MISS ALL OF YOU ALREADY!!

I TRULY SLOWED DOWN AND LIVED IN THE  MOMENT BECAUSE I KNEW THAT IT WOULD ALL FLY BY WAY TOO FAST AND IT DID!!

Thank  you for reading as I love nothing than sharing my story and journey,
Lex