7.05.2017

God Bless America

God Bless America and Happy July 4th!!  

 I had a very happy 4th of July weekend and I  lived in and enjoyed the moment with  my big and crazy family!! I  hope that  YOU did too!

On Sunday I went to my Auntie Carol's cottage to celebrate the fourth with my Mom's family!  We went on their float and to the beach and had a cookout! It was a great time!















On July 3rd I went with my sister Liz to target and got things for my bathroom in her new town house because  she is moving ONLY EIGHT MINUTES AWAY YAY YAY!!! Then we had a blast swimming in my pool! That night we had a cookout with her husband, my mom and grandparents and we made s'mores and sat by the fire and my papa played his guitar and we sang songs! ! We saw fireworks from our yard! It was a perfect 10 day!!



Yesterday I sat by my pool and had a cookout with my family!!




I am forever grateful for my free country and fo the men and women who fight every day for our freedom because FREEDOM IS NEVER FREE!! GOD  BLESS AMERICA!!!

I AM A SUMMER, BEACH, POOL, AND SUN KINDA GIRL AND SUMMER WILL FOREVER AND ALWAYS HAVE MY HEART!! YAY  YAY FOR SUMMER AND JULY FOURTH!!

Thanks for reading as I love nothing more than sharing my heart,
Lex

Thanks for taking the beautiful pictures Auntie Kim!




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



1.03.2017

Merry Christmas and happy New Year



Merry Christmas and Happy New Years friends!!

I had a perfect Christmas and New Years and I hope that you got all that you could have ever wanted from Santa and had a great new year!

On Christmas Eve which is my absolute favorite day 
of the year there were 60 people of my moms family here celebrating Christmas!



On Christmas morning I opened presents with my family and I felt blessed, thankful, and grateful because I got everything that I could have ever wanted from my family! My two favorite gifts are my Kate spade purse  my sister and new brother in law and a waterproof blue tooth speaker from my parents!





On Christmas Day I went to my aunt and uncles house and spent the day with my step dads family!



On New Year's Eve I went to my aunt and uncles house and had a lot of laughs and fun with my moms  family!!





All in all I had a really great and fun holiday season and I slowed down and truly lived in each and every moment with passion because I knew that it would fly by way too fast and I was exactly right about everything!! πŸ’•πŸ˜✨πŸ’™πŸ’ƒπŸΎπŸŽ…πŸ»πŸŽ„

As always thanks for reading because I love nothing more than sharing my heart, story, and journey
with YOU, 
Alexandra