I am truly hoping that Jessica will be at the HDSA Convention in Boston this year, this young lady is beautiful inside and out, she in an inspiration to the HD community and fighting for us all!! This is her story and i hope you enjoy it as much as i did!!
I never expected to be so drastically impacted by this disease. I didn’t grow up knowing HD. In fact, I was almost an adult when I learned that such a thing existed. I was introduced to HD in 2010 when I met the father of my future niece and nephew, Justin Fender. As I learned more about Huntington’s disease, I quickly learned that both Autumn and Logan had a 50/50 chance of having HD themselves. It was this realization that pushed me into advocacy for the HD community.
Over the past eight years I’ve been apart of Team Hope Walks in 4 different states, hosted a Team Hope Walk on my college campus, meet with over 11 congress representatives about the HD Parity Act, helped create a music video to bring awareness to HD, attended an NYA retreat, and helped raise scholarship money in the 12 Days of NYA campaign. I’m currently a regional leader for the NYA and a board member on the Omaha Affiliate Chapter of the HDSA.
Autumn and Logan have always been my motivation to be involved and do as much as I can for the HD community. This past year only heightened my drive as Autumn was diagnosed with juvenile HD. This changed my entire world in one phone call. In the beginning, I felt adjacent to HD because although I knew of HD, I didn’t really know HD in the same capacity of those around me. I had very little contact with Justin and I couldn’t even begin to imagine what it meant for a loved one to be diagnosed with HD. At that moment, I understood everything I hadn’t before.
The more time I’ve spent apart of the HD community, I’ve realized a need for people to help spread awareness about the disease. HD is a family disease that impacts every aspect of a family’s livelihood. Income is lost once an affected person can no longer work, healthcare is incredibly limiting and expensive, and often being a caregiver to someone with HD is a full-time job. This can be overwhelming. This community needs the support of the entire world to help find a cure.
This past year has been particularly hard. When I first learned about Autumn’s diagnosis I was living in South Carolina, over 2,000 miles away from Autumn and my family. Dealing with HD is not easy, and it can feel very isolating. The distance magnified this feeling. Thankfully I’ve found people across the world that understand what I’m going though and that have been my support system.
In 2013 I was interning near Washington, D.C. I spent the entire summer traveling to representatives’ offices to discuss the HD Parity Act. I met with Representative Martha Roby and shared with her my relation to HD and at the end of our meeting she agreed to Co-Sponsor the bill. It was an incredible moment because I realized that one person can make a difference, and I felt that my hard work and persistence had paid off. This is something I often think about when I feel like I’m not making progress in my fight against HD. Everything we do makes a small impact and eventually those small ripples will turn into a wave of change.
In 2015 my mom found a song that was written about HD. My close friend and I decided to do a dance to it for HD awareness month. I decided to share the dance with the author of the song which led to us traveling to Texas to be apart of the music video being created to help spread awareness for HD. This was a once in a lifetime experience and it introduced me to one of the most amazing people I’ve ever known, Michelle Brumble. She has dedicated a large part of her life to spreading awareness for HD and through using her gifts as a song writer she’s made it accessible through a new platform. This experience was filled with so many emotions, but hope is the most important.
Jessica you have done and continue to do so much for the HD community and i hope you know what an inspiration you are!!