11.04.2017

Living With Passion Book Club

Happy November my friends!

I am starting a free Living With Passion Book Club on Instagram!!



At  the beginning of the month I will    choose a new book and post it on my Instagram! At the end of the month I will post discussion questions and we can discuss the book via Instagram!!

I figured that this can be something to get trough the winter!

Follow me livingwithpassionlexi on Instagram to join my book Club!





Thanks
Alexandra

10.16.2017

Family is Everything!

Good afternoon and happy Motivation Monday my beautiful friends!!

To me family will forever and always be everything!

My moms Dad is Italian and him and his wife had 7 children, and now they have 29 grandkids and 20 great grandkids!! I was raised  by my grandparents to love  your cousins as your bests friends and your siblings so my family is everything to me! We are always having family parties to celebrate some one or a holiday. My favorite family tradition is that's every Sunday since before I was born there is a weekly Sunday morning breakfast at my grandparents house and my Papa cooks breakfast for my family!














My Dad died of HD, the same awful disease that I fight every single day!  HD is a genetic disorder and if you have HD then you have a 50/50 chance of passing it on to your children, so my Dad, his Dad, and eight out of the 11 kids have HD!









Ne I have been diagnosed both sides of my family have shown me that they remember to love, accept, and support me for being me and they are my biggest supporters and show their love at the Team Hope Walks!


I don't know where I would be without family!!!

Thanks for reading,
Alexandra Boothby





8.25.2017

My 27th birthday!!

I had an infinity birthday week!

My birthday was August 15th!

On Sunday night I went to my Auntie Carol's cottage on Cape Cod with my mom and sister Liz!

On Monday we took a ride down the cape, stopped at boutiques and antique stores, went to lunch at the absolutely beautiful Chatham Bars Inn, and went shopping at Mashpee Commons! We all had a perfect ten day! Thanks to my mom, sister, and aunt for taking the day off to celebrate me and for taking me shopping and to lunch and buying me things!!







On Tuesday I went to the beach with my mom and sister Liz! On the night of my birthday we had pizza with my grandparents then everyone in my Mom's family came over for cake and we had a lot of people come cerebrate me!! I cried when they sang happy birthday and everyone brought me cards for my birthday!






  Thanks to my family for coming to celebrate me!





I had a perfect 27th birthday!


Thanks for reading,
Alex






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