Connect with our region:
By Matthew Santamaria (msantamaria@hdsa.org)

When you are passionate about a topic, you want to take action. You want to show others how you truly feel and this is what Jessica Fitzpatrick from Omaha, Nebraska is doing.

She never knew about Huntington’s disease (HD) growing up. This is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.

In 2010, she was introduced to the disease when Jessica met the father, Justin, of her future niece and nephew. He was in early diagnosis with HD and Jessica didn’t quite grasp the future of his children, Autumn and Logan. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

“As I watched Justin’s disease progress, I slowly became more involved in the HD community,” Jessica explains. “I felt helpless when thinking about Autumn and Logan’s potential future, and sought to do as much as I could to help find a cure for Huntington’s disease.”

In that same year, she attended HDSA’s Team Hope Walk events in Tennessee, Alabama, South Carolina, and Wyoming. She also held a Team Hope Walk on her college campus.

The Team Hope Walk program is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. It has appeared in more than 100 cities since its inception in 2007.

“Everywhere I’ve moved over the past 8 years, I found a local HD community that to this day support and inspire me.”

Even though Jessica was doing this incredible outreach, she felt adjacent to HD because she did not really know about HD in the same capacity that others do. “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.”

That would change in January of 2018.

Justin daughter’s Autumn was diagnosed with Juvenile Onset Huntington Disease (JHD). This is a form of HD that affects children and teenagers. This is a more progressive form of HD as Jessica would learn.

“Huntington’s disease is a very heavy diagnosis,” Jessica explains. “This sent me into a tailspin at first. But thankfully, I have the benefit of being surrounded by others that understand what that feels like. I owe a lot to the support groups in Charleston and Omaha who welcomed me in with open arms and helped me start my process of grieving and coming to terms with Autumn’s future.”

This would make Jessica more determined to fight the good fight and show others there is an entire HD community supporting you through thick and thin.

“Find your HD Ohana (family) and lean on them,” said Jessica. “The world of HD can feel very isolating, but you are not alone. We have the benefit of living in a world where you can connect with others with a simple click of a mouse or the swipe of your finger.”

Currently, Jessica is the Regional Lead for HDSA’s National Youth Alliance. This is a collection of children, teens, and young adults from across the country that motivates young people to get involved in their local HDSA Chapters, Affiliates, and Support Groups.

“The best memories I have of the past year are attending HDSA’s Team Hope Walk events, bowling events, and the NYA retreat.”

Jessica also spent the summer speaking to congress representatives on Capitol Hill about the HD Parity Act. This is a bipartisan bill that ensures Medicare is made available to people with Huntington’s disease (HD) immediately upon qualification for disability.

“Get involved any way that you can,” Jessica explains. “Helping spread awareness and raising funds for the HDSA has helped me find a new hope for the future.”

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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America (HDSA) is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

​To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org