6.21.2014

HDSA Convention Part One: Thursday

On Wednesday, Liz and I headed to Kentucky for the HDSA Convention. I was beyond excited to be able to attend!! Thanks to the NYA Liz and I were able to get a partial scholarship and did not have to pay for our airfare.

My words will not do justice for the experience I had and the strong and resilient people I met but I am going to try.

Let me first tell you about something that I was a little bit frustrated about on our way to Kentucky. Liz and I were flying really late at night and I was just exhausted. When I am exhausted my symptoms flare which makes it harder for me to walk. Therefore, we requested a wheel chair for when we arrive in Louisville to make the travel easier on me. However, when we got off the plane Liz went to grab the wheel chair and a worker yelled at her and said you can’t take that someone requested it. Liz tried to explain that we were the ones who requested it and she snapped back and said “who needs it?!” When Liz replied, “she does” the lady looked me up and down and told us we had to wait for someone to come verify that. I was so annoyed and frustrated we decided to walk.THIS situation is the whole reason why I blog and why I share my journey. More people need to know about HD and be aware of HD. Just because I look young and appear to be “fine” isn't always the case. However, weirdly, this situation just got me even more excited to be at the convention.

Besides being exhausted on Wednesday, I would say that I felt AMAZING at the convention. My movements were minimal and I was emotionally feeling great.  I was happy and when I am happy my symptoms seem to be few and far between J(which is ironic because as I write this on the plane my body is so exhausted it is hard for me to even sit in my chair)

Thursday was NYA Day. NYA stands for the National Youth Alliance and is a sector of the HDSA. The age ranges of the NYA include 9-29 of youth who are affected by HD. The goal of the NYA is to be the last generation who has to suffer and be affected by HD. We all have hope for a cure.
During NYA Day we learned about the importance of clinical trials, had ice breakers, learned about raising awareness, and how to cope growing up in an HD family. NYA Day was beyond my expectations. Thank you thank you thank you to the NYA Board and for all of the hard work you put in to make this day so special – you are all so inspiringI was blown away.

That evening Liz and I hung out with our new friends in the NYA. Everyone in the NYA is absolutely incredible and inspiring. They were all so welcoming and kind to us. I know that I have said in my previous posts about wanting an HD family…. well without a doubt I have one. I have never felt more connected to people as fast as I did with the young people I met at the convention. We all have at least a parent, if not more family, who suffers from HD. Most people there are either at risk, have tested positive, or have tested negative. We all just instantly get each other J One thing I loved is that there were people there who tested gene negative and they STILL wanted to be there fighting the good fight with us J Thank you all for being so amazing to us!!!!

That night Liz and I had a long talk about me and my case of HD and how I compare to other people with HD. I told some people that I had HD, they all come from families of HD, and some said they did not notice (insert shock!).  We talked about how I feel like my symptomare horrible  becauseit is all I know, but there are people in much later stages than me and I need to be grateful for my condition. There are people who have it worse than me and still working. There are people who have it worse than me and are much younger than me. As you remember, I chose to quit my job of working with Autistic students because of HD. But after this weekend I believe I am still capable of teaching general education. I have been inspired by people with HD, at the convention to apply to become a substitute teacher. Teaching makes me happy so that’s what I am going to do and I truly believe it is part of fighting the good fight.


The convention and NYA has changed my life for the better, and that would not have happened if Liz never reached out to Seth. So thank  you Liz and Seth.


Thank you again to all of you who read. My hope is to not only share my story but that you will share my story and blog with others. I want nothing more than to bring awareness to this horrific disease and someday find a cure.
Stay tuned for my other posts relating to the convention.

Oh, and if you care to learn more about HD I have good news for you! The convention is streaming many of the workshops for people at home to watch! (I will be watching some today from my pool). Just click here.

Help for today. Hope for tomorrow.

Alex