Family fights Huntington's disease with legacy of caring

The oldest of nine children, Patti Senne of West Chicago remembers her father, Joe Cuccinotto, as an active and vibrant man. That was before Huntington's disease steadily robbed the former high school teacher and coach of the ability to care for himself.

But Joe Cuccinotto never lost his spirit.

“He was an incredible guy. Even though he was suffering, he never, ever, ever gave up,” Senne said. “He was constantly trying to improve himself.”

Joe Cuccinotto died in 1997, but he inspired that same spirit of always trying to do better in his widow, children and in-laws who were named Family of the Year by the Huntington's Disease Society of America-Illinois Chapter in August.

Senne's youngest brother, John Cuccinotto of Lombard, is a board member of HDSA-Illinois and co-chairs with his sister Linda the annual Hoop-A-Thon fundraiser. Senne is involved with support groups for Huntington's. Other family members, including their 83-year-old mother, Therese, pitch in where they can. Three of the siblings have the disease.

“You can't just stand by when you saw that happen to a parent and you're experiencing it with your siblings,” Cuccinotto said. “To turn my back on them now, I think would be shameful.”

Reason to hope

Cuccinotto credits his parents with instilling in him the desire to help others. His dad, Joe, was an orphan who was raised in what is now Maryville Academy in Des Plaines. He later became a teacher, athletic director and mentor at Maryville, and is still remembered by many alumni, Cuccinotto said.

“The nucleus (of support) has been all the people my mom and dad touched during their lives,” he said.

For the first five years Cuccinotto and his sister chaired the annual Hoop-a-Thon fundraiser, it was held at Maryville. The sixth annual Hoop-A-Thon this past May moved to Notre Dame College Prep in Niles, where it drew 250 people.

“Over six years, we've raised over $120,000,” Cuccinotto said.

Cuccinotto's mother, Therese, and her sister, Helen O'Connor, remain key supporters of the event.

“I'm very proud of my kids stepping up and doing something,” Therese Cuccinotto said. “It (Huntington's) has to be out there and known about.”

Therese had never heard of Huntington's before her husband was diagnosed with it 15 to 16 years before he died. Even before the diagnosis, she suspected something was wrong. Her husband was an erratic driver and made a lot of motions.

“I kept saying, ‘Something is the matter with him. Maybe I should take him to a new doctor,'” she recalled.

Joe Cuccinotto was diagnosed, but much was still unknown about the disease. The gene that causes it wasn't discovered until 1993, John Cuccinotto said. Senne recalled her father worrying that he had somehow brought the disease on himself by a lifestyle that had included smoking and drinking.

“He just felt terrible that people had to take care of him,” Cuccinotto said.

A hereditary, degenerative brain disorder, Huntington's slowly diminishes the affected individual's ability to walk, think, talk and reason. Symptoms normally appear when a person is between 30 and 50 years old and progress over a 10- to 25-year period, according to the HSDA-IL website.

More than 30,000 people in the United States are currently diagnosed with Huntington's. Each of their children and siblings has a 50 percent chance of developing the disease.

No cure is available, although medication can diminish some of the symptoms. Cuccinotto said research is progressing. Only in the last few years has a drug specifically for Huntington's patients been developed. Some doctors are devoting their research to Huntington's rather than moving on to other fields, he said.

“There's still a long way to go, but I'm encouraged by all of that,” he said.

The money raised by the basketball Hoop-a-Thon goes to research and to pay for family services, which are provided free to patients.

Helping each other

Cuccinotto said his own family has been fortunate. Marriages often break up when one spouse develops Huntington's, but his mother stayed with his father and is now the main caregiver for one of his sisters who has the disease.

“We're doing it because there are those out there who aren't getting that love or support or commitment,” he said.

Cuccinotto's own commitment deepened over time. Early in his career, he worked in sports marketing and helped raise funds for other organizations.

“I kept telling myself why am I not doing this in my own backyard,” he said.

Married with two children, Cuccinotto now works for a food flavoring manufacturer and runs his own real estate business. He estimates he spends at least 20 hours a week working for the Huntington's organization and helping siblings with the disease.

“I'm afraid to count the hours,” he said. “We have fun along the way.”

The Cuccinotto family also raises funds for other causes that affect their family and friends, such as Alzheimer's disease and multiple sclerosis.

“It's a labor of love,” said Senne, an employed mother of five and grandmother of three. “If you don't get involved, you're not going to make a difference.”

“I believe we should all take care of each other,” Cuccinotto said. “Even if it's big or small, you can do something to help somebody else out.”

For details on Huntington's disease, see hdsa-il.org. For information on the Hoop-a-Thon fundraiser, go hdhoops.org.