Updated: Mar 24, 2022
Yes, you read that correct, we have the amazing and brilliant Jessica back, giving us an update! For anyone that is new around here, Jessica took part in the #MyMayMessage in 2019, sharing her story. If you haven't read her first blog post, or you want a little refresher, please click here! If you want to keep up to date with the amazing work Jessica is doing, please visit her Instagram page by clicking here! or her website by clicking here!
*How many times am i going to say amazing in this post?*
This post brought tears to my eyes! Jessica is a beautiful girl inside and out and as you read you will clearly see how much she does for the HD community and i am sure you will all agree! We are so lucky to have such a positive amazing young girl raising awareness for HD and doing everything she can for those who need it!
I can't believe we were both at the HDSA Convention in Boston and didn't get to meet!! I do plan on making it back to the HDSA Convention, and i demand we have a proper catch up in person :D :D
Please continue to read Jessica's update on what she has been doing since 2019, because i promise it is inspiring. A global pandemic did not stop this girl from being amazing!!
2019 - > 2021 - What has Jessica been up to?...
The past two years can be broken into two sections: pre-COVID and post-COVID. Prior to the global pandemic – I was able to attend the last in-person HDSA Convention in Boston. I can not fully describe even two years later just how incredible convention was. I got to connect with people my age, build new friendships, spend some quality time with my family, and receive an NYA Award for Advocacy alongside my niece and nephew. Most importantly, I walked away from convention ready to do more and fight harder for the HD Community. Despite COVID changing our world – I like to think that I did accomplish what I set out to do.
When I shared about my involvement with HD and Autumn’s recent diagnosis in 2019 – I was still very much coming to terms with her diagnosis and what the future looked like for our family. The last time I saw Autumn was in December 2019 when we celebrated Christmas at my parent’s house. Even before then, Autumn and I’s messages, texts, and TikTok interactions became sparser due to her JHD. Now I communicate through my mom who lives in Wyoming near Autumn and watch her live her life through the amazing awareness videos that Autumn and her mom, Londen, share on social media. I’m counting down the days until I can safely travel back to Wyoming and spend quality time with my family.
Autumn and her brother Logan will always be my main purpose in advocating so strongly for the HD community – but I’ve had the utmost privilege of developing close relationships with the HD community in Charleston, Omaha, and now Oklahoma. These bonds now play an equal role in my desire to step in where there is a need. Sometimes this means stepping out of my comfort zone, stepping away from my personal tie to HD, and being a support to others in their time of need.
Before COVID took away in-person events, I had the honour of attending two fundraisers for HD in Oklahoma. The first one was a Car Show in Lawton and the second was a Team Hope Walk in OKC. I attended both events as the Oklahoma Regional Lead for the National Youth Alliance. At the car show, I met a woman who grew up in the same hometown as I did in Wyoming. It felt incredibly serendipitous to have met a fellow Gillette native after having just moved to a new state. Only a couple of weeks later at the OKC Team Hope Walk, I met a young man, who changed my perspective on my role in the HD community, and the importance of the many different HD related programs we have across the US. This young man was contemplating moving his mom with HD into a care facility and was also struggling with having never opened up about HD and how it’s impacted his life. We cried together that day – and it made me realize just how important it is to have a solid foundation in place to connect local people with the resources they deserve.
Oklahoma is a huge state with the main metropolis areas being fairly spread out from each other. This has proven to be an interesting challenge in providing the resources offered by HDSA and other HD organizations to those outside of the metro areas. This has been a change from what I experienced in Charleston and Omaha but has allowed me to step into new experiences and grow as a leader and an advocate. This past summer I was elected Vice President of the Oklahoma Chapter of HDSA and I’m really excited to see how our local chapter can serve our HD community this upcoming year.
One thing that OKC didn’t have that I had grown very fond of in Omaha and Charleston was a local HD support group. And out of pure selfishness – I decided to start one. We were able to meet once in person before the global pandemic hit and meeting virtually for a new group proved difficult. I’m hoping to get the group up and running again this summer – in a hybrid virtual and in-person meeting each month. For the past two years, I have been able to coordinate a Governor Proclamation for HD Awareness Month and the lighting of the Skydance Bridge (blue and purple) on May 1st.
In June 2020 I joined the National Youth Alliance Board as the Communications and Advocacy Chair. COVID has drastically shaped the way we are able to connect as a community and it’s offered a great opportunity for the NYA to offer mini-sessions on different topics regarding HD. We’ve also had a few Trivia Tuesdays on our social media and I’m hoping to make that a more regular thing if life ever slows down. As part of this role, I’ve had the honour of jumping back into advocacy in an effort to Pass the HD Parity Act. So far we have had one OK State Representative, Tom Cole, sign on to co-sponsor the Bill. I’m really hopeful that he will be the first of several co-sponsors from Oklahoma. Also if you are reading this and you live in the US – please please please send a letter to your state legislatures to co-sponsor the HD Parity Act!
I’m thankful for the love, connections, and trust the HD family has given me over these past two years. I think back to the seeds that have been planted in just the last two years and it gives me immense hope for our future here in Oklahoma. I’m inspired by everyone I meet in the HD Community but especially those like Ashley and my fellow NYA Board who go above and beyond to spread awareness and bring hope to our HD family.