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By Matthew Santamaria (msantamaria@hdsa.org)

Over sixty years ago, Massachusetts resident Steve Yanofsky lived downstairs from the Frank family. Steve was close to the children of the family including Jonathan, Claudia, Andrea, and Jamie.

“I remember playing with all of them in the playgrounds located right behind the project building,” said Steve. “We would play red rover, baseball, marbles and more in our commonly shared backyard as well as Franklin Field, located directly across the street from our three-story orange brick building. This was a happy time to be a little boy.”
 

Sumner was the patriarch in the Frank family and was a doctor. However, he would then be on the other side as a patient. Sumner tested positive for the gene that causes Huntington’s disease (HD), 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.

This also meant that all four children were at risk for HD. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. They would all test positive as their mother, Natalie, would take care of them.

“She was a great woman who I had admired the moment I met her,” Steve explains. “She was an extraordinarily strong woman. Despite her daily grind, she was still so pleasant, so thoughtful and caring to everyone around her.”

Steve was not at risk for HD. However, he wanted to make a difference in the HD Community to help families like the Frank family. For decades, Steve has participated in the annual Chapter event called Hoop-A-Thon for HD.

Hoop-A-Thon for HD involves shooting foul shots for ten minutes, non-stop with several volunteers rebounding for you in an assembly line fashion. The goal of the event was to raise as much money as possible by getting family and friends to sponsor you. There would be prizes for the top scores in each division plus a silent auction. Boston TV and radio personalities have participated in the event including Jackie MacMullan, Dick Albert, Harvey Leonard and Jim Boyd. The event takes place at Boston College and at Lexington High School in Massachusetts.
 

“The children of the Frank family would attend the event, even while their condition worsened,” said Steve. “Other HD patients would also be present trying their best to thank all of those who participated in the event and helped to raise money to find a cure.”

All members of the Frank family have passed away as Natalie succumbed to cancer.
“They were six special people who didn’t deserve to suffer,” Steve explains. “Six people I will never forget. The Hoop-a-thon is an event that I look forward to every year. Someday, there will be a cure so that future families can live normal lives. I hope that day comes soon.”

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Huntington’s disease (HD) 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. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD 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.  

HDSA was founded in 1967 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day. 

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