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By Matthew Santamaria (msantamaria@hdsa.org)

At the age of six years old, Jennifer Hill had no worries in the world. She was at a young age and was just starting to experience the world. However, she would experience not the good in life but the bad.

At the age of six years old, Jennifer did not understand why her mother was deteriorating. Her mother was showing chorea and other symptoms of Huntington’s disease (HD). At the age of nine years old, Jennifer found out her mother had the disease. 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.

Then, when Jennifer was 15 years old, her mother would take her own life due to the effects of HD. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. This includes personality changes, memory loss, forgetfulness, impaired judgement, slurred speech, difficulty in swallowing, and significant weight loss.

“Many times I often question why things happen in life,” Jennifer explains. “That was the most devastating thing I’d ever been through.”

Four years later, Jennifer wanted to get involved with HDSA after finding out that she could potentially have the disease. 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.

“If my mother were still alive and well she would be doing anything in her power to help find a cure,” said Jennifer. “As her daughter, I decided to fight this battle for her.”

Through HDSA, she would join the National Youth Alliance (NYA). It is a collection of young men and women aged 9-29 that are impacted by HD. They not only support young people within the HD Community, but also inspire the youth of HDSA to get involved. Jenny would join NYA at HDSA’ National Conventions. For more information about this year’s Convention in Boston, click here.

This was when my HD family began to form and I look forward to seeing the same faces at National Conventions every year,” said Jennifer. “It also caused a hard ache because I knew I was at risk for. As each year went by, some of my HD family members, who were in their late stages, were no longer at those conferences because they had passed away. As our HD family began to lose members, it became evident to me that I needed to get tested and do whatever I could to fight for the cause.”

At the age of 25, Jennifer was ready to be tested. Only 5-10% of at risk patients get tested as it did not come back in her favor. She tested positive.

“The reality is that one day I must deal with the cognitive, motor, and behavioral deficits that will continue to increase as I get older,” Jennifer explains. “This affects my decisions about having children and the possibility of passing on the disease runs through my mind constantly. I could still have kids but I wasn’t going to pass on the disease. This meant that I needed to apply for life insurance and long-term disability and make sure that my future was set up.”

Around this time, Jennifer was living in Las Vegas and wanted to form an affiliate there for HDSA. It began with just Jennifer and her husband conducting phone conferences with staff members of HDSA.

“As we started reaching out to the community, we discovered there were many more people affected by HD then we had realized,” said Jennifer. “The original committee of myself and my husband became three, then four, then five, and we ended up creating a full committee working toward establishing the Las Vegas affiliate under HDSA.”

Jennifer would then move to San Diego, California and she is a board member with HDSA's San Diego Chapter. Even though she moved, she is happy to know that she laid the foundation for the Las Vegas . “I continually check in with the Las Vegas affiliate which continues to grow and reach out to members in their community.” In San Diego, she is a board member with HDSA’s San Diego Chapter.

Currently, Jennifer is a Clinical Licensed Therapist for the Healing Hearts Counseling Center in Encinitas, California. “Every time I help a person who is struggling with suicide, medical illnesses, or mental health issues- I reflect upon my own mother and reassured that being a counselor is what God had planned for me all along.”

She has a message for the HD Community and others to get involved: “For everyone out there affected by Huntington’s, whether or not they have HD, you can help out in so many ways to fight against this horrific disease and make a difference. A little help goes a long way! There is not a cure yet but with every dollar we fundraise, and every effort we strive for, then we make a difference and get closer to the cure!”

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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 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