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By Matthew Santamaria (msantamaria@hdsa.org)

Growing up, John Howard considered himself a “free soul”. He would explore everything and anything because he wanted to know what life had to offer. John participated in as many sports he could and was a straight A student.

John graduated high school with a baseball scholarship but declined because he did not want to go away to college. Instead, he would get a 9-5 job and was living a good life. He had an older brother named Steve that he considered to be his best friend. They would do everything together as his brother bailed him out of trouble many times. He describes his sister, Tracy, as hard working, career focused, and the life of the party.

“Always had a smile and was willing to do anything for someone in need,” John explains. “We even roomed together after we both got out of relationships. She also took me on a Mexican vacation that she won and always wanted to make sure that you were comfortable at all times.”

His father Dwight was someone that inspired John throughout his life. Dwight had John riding a bike at age 3 and changing tires at age 7. According to John, he got all of his strength from him as Dwight is the hardest working person that he knows and considers him his HERO.

“He was the life of the party every day and his musical taste while working in the garage was second to none,” said John. “Because of my Father, I have an incredible depth of music knowledge and he would school me on everything over the years.”

John’s mother, Janet, was a teacher. When there was a strike, Janet would hold her classes in her kitchen. She was also a baseball coach and even fit over 7 kids into her tiny car to also go to basketball games as well.

“She was a LEADER,” his mother explains. “My mother knew we were following in her footsteps so she would lead by example. Nothing was taught until something was learned. We never had an abundance as a family but we were never in need.”

However, in his early 20’s, John’s world would suddenly change after his mother was diagnosed with Huntington’s disease (HD). 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. Janet’s father had HD. Her father had 5 children and 3 of them were diagnosed with the disease. John’s Aunt and Uncle passed away from the disease.

At a young age, John would then get tested for the disease as he had a family of his own to take care of now. “I was an immature and tough guy kid and wasn’t strong enough emotionally to handle a positive test. I needed to know about HD and my family’s future because nobody at that time ever talked about this disease because it felt like some type of taboo.”

Janet’s children knew the chances of them diagnosed with HD. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Steve and John tested at the same time and both tested positive. Tracy never was genetically tested, but she was diagnosed due to showing symptoms.

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. These symptoms usually appear between the ages of 30-50, and worsen over a 10-25 year period. Symptoms include personality changes, forgetfulness, involuntary movements, slurred speech, difficulty in swallowing, and weight loss. Over time, HD affects the individual’s ability to reason, walk and speak.

John did not want to turn to drugs or alcohol in order to cope with the disease. Instead, he started to write about what we was going through. This is where creativity is born as he would learn from his father. He would use poetry as a way to express his feelings. To watch John read his poetry, click here.

“I believe so much in talking about HD to raise awareness that I have dedicated my poetry to be a fight for HD and have created a YouTube page to help people feel the emotion of the cause,” John explains. “This is also a brain workout for me as a way to stay active and creative.”

John and his wife Virginia wanted to raise more awareness as they were looking for charities or events that were related to HD in the Illinois area.

“We thought it might help ease the upcoming burden of HD,” said John. “That’s when we found HDSA’s Illinois chapter was doing Team HOPE 5K’s and Walks in order to raise funds and awareness. We joined them in the cause and have be doing the events ever since (with the exception of maybe a year to two total).”

Currently, John is 41 years old and lives in Chicago, Illinois. He is on Disability because of HD. His mother would pass away from the disease. John still does not give up hope that a cure is on the horizon.

“There are so many trials and tests being done now that the future is very bright for our cause,” John explains. “Hang in there, slow things down, and remember to always keep your cup half full.”

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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