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By Matthew Santamaria (msantamaria@hdsa.org)

Orange County resident Etta Tash was first born in Los Angeles and then moved to Norwalk, California. For years, she was an advocate for her sister, Jewel.

Jewel tested positive for the gene that causes Huntington’s disease (HD).

HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It usually deteriorates a person’s physical and mental abilities during their prime working years and has no cure.

Their father had another daughter, Carey, with his second wife. Carey has had three bouts with cancer and now believes that she also has symptoms to HD. Etta also believes that her Aunt has HD as she unable to hold a drink with one hand and needs both of her hands. Jewel had the same difficulty.

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, forgetfulness, involuntary movements, slurred speech, and difficulty swallowing.

Once she was diagnosed, Jewel and her husband moved to Florida to be near their daughter, Rikki. However, Rikki did not have the time to properly care for Jewel due to caring for her own family. Rikki knows about the chances of her having the disease but does not want to know as she wants to enjoy her life. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.

The decision to get genetically tested is difficult to make. Each year, 5-10% are tested. It is never the right or wrong decision to be tested. There are people that see no benefit in knowing that they will develop the disease while others want to know in order to make informed choices about their future. It can take up to several weeks to receive your results from the genetic testing center.

Five years later, Jewel would return to California where she would be closer to her sister. They both wanted to do more in the community. According to Etta, Jewel was an advocate for the HD Community and wanted to bring more awareness.

In December of 2017, Jewel passed away during a light show from NASA. Etta has continued to honor her memory as she is the Captain of the Team Hope Walk team “Jewel’s Reasons”.

Jewel’s one wish was that her daughter or Etta do not have HD.

“I walk for her and I will continue to walk and raise awareness of this disease as she cannot smile or tell us we love her or hold her,” Etta explains. “I will walk until I cannot walk anymore. Until my grandchildren push me in a wheelchair.”

Etta is currently a Board Member for HDSA’s Orange County Chapter.

“She’s been a member of our chapter for over four years now, and is super supportive and positive,” said Bill Waddington, HDSA’s Orange County Chapter Vice President. “She helps out at any event she can, and is a regular walk attendee too.”

Her message to the HD Community: “The cure is so close all it takes are pennies from Heaven. Pennies. How easy for our fighters. Our Warriors. Our family.”

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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 usually during their prime working years and has no cure. Every 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 41,000 symptomatic Americans and 200,000 at-risk of inheriting the disease. In less than 10% of cases, juvenile Huntington’s disease (JHD) affects children & adolescents. JHD usually has a more rapid progression rate than adult onset HD; the earlier the onset, the faster JHD progresses. HD is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. HD is characterized by a triad of symptoms, including progressive motor dysfunction, behavioral disturbance and cognitive decline.

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