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Huntington's Disease Youth Organization

Inside PREDICT-HD: The view of a young person

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

HDYO was contacted by a young person who was working with the PREDICT-HD team and wanted to share her experiences of both being impacted by HD and working in HD research. At HDYO we are always thrilled to share young peoples’ stories and I think you will all agree Jolene has shown great resilience in life and is now tackling HD head-on with great positivity. This is Jolene’s story:

Jolene’s HD Story

Jolene Luther

My name is Jolene Luther and I’m a 20-year-old Spanish/pre-med major at the University of Iowa in Iowa City, IA, USA. I’d like to share my story.

My journey with Huntington disease started when I was 11 years old. My grandpa’s brother had recently passed away from HD and my grandpa suspected that he had the disease as well. I went with my mom and grandpa to a genetic counseling and testing center, where we found out that my grandpa was gene positive but, most fortunately, my mom wasn’t. My grandpa was then moved from his home in Lander, Wyoming — where he’d spent most of his life — to our home in Wisconsin. My mom wanted him with us so that she could take care of him as his HD progressed. Slowly, the mountain climbing, long-distance biking, bread making, swim coaching man that everyone loved changed in front of our eyes and there was nothing we could do about it. His battle with HD ended in the fall of 2012, in our home where he had been lovingly cared for by his family for nine years.

I was just entering college at the University of Iowa in my grandpa’s last few years, and after he passed away in the fall I felt so empty. Taking care of my grandpa had been a part of my life for as long as I could remember and I really wanted to do something to keep his memory alive.

Getting involved in HD

Jolene

My mom had been coming to the University of Iowa to visit the Huntington’s Disease Society of America Center of Excellence here to participate in the PREDICT-HD study, the global observational study that is centrally coordinated at the center. I was her companion for one of her study visits and was fascinated by all the fun tests that she got to do — and secretly wished I could participate as well! So as I was finishing up my second year of school, I decided on a whim to reach out to the staff at the Center of Excellence and convince them to give me a job. Thankfully, it worked! I’ve been working this summer with PREDICT-HD Public Relations Coordinator Sean Thompson, doing a lot of writing projects under his supervision. My main project has been summarizing PREDICT-HD’s articles published in medical journals for the study website, in order to make them more accessible to the public.

Working with PREDICT-HD

This job had been more rewarding than I’d ever hoped! I’ve learned so much about research studies and learned how extremely important they are. PREDICT-HD is so important because it’s providing insight about the very earliest changes that happen to people with HD. The more we learn about the earliest changes, the closer we get to finding a way to delay the onset of HD so that people can live normal, healthy lives for even longer. I hope that by summarizing the medical journal articles published by the PREDICT-HD researchers, those who participated can really see how much they are contributing to the knowledge of HD.

The future

Jolene

Now that my summer here at the Center of Excellence is coming to a close, I’m getting ready to head to Spain to study abroad for the year! I’m so excited for the experiences that lie ahead this year. I especially look forward to getting in touch with HD researchers in Spain, who worked with some of the staff at the center on past PREDICT-HD studies, and see what kind of HD projects they’re working on. When I get back, I hope to do some more work here at the center. My time here has solidified my goal of becoming a doctor so that I can help treat people with HD — and maybe even work in HD research!

It’s because I took that first step to get involved with the HD community that I’ve met so many amazing and supportive people, made a difference, and learned what I want to do and who I want to be.

I’d like to personally thank everyone who has participated in the PREDICT-HD study and I encourage everyone to get out there and find some way to participate in studies like PREDICT-HD. It really is rewarding and so important toward making a better future for those affected by diseases like HD.