PRO’s officials are joining the Huntington’s Disease Society of America (HDSA) during May to bring awareness to the fight against Huntington’s Disease.
About Huntington’s Disease
Huntington’s disease is an incurable, hereditary brain disorder. It is a devastating disease for which there is currently no effective treatment.
Current medications only attack the symptoms, rather than the underlying issues of Huntington’s Disease, in which nerve cells become damaged, causing various parts of the brain to deteriorate.
The disease affects movement, behavior and cognition – the individuals’ abilities to walk, think, reason and talk are gradually eroded to such a point that they eventually become entirely reliant on other people for their care.
Huntington’s Disease has a major emotional, mental, social and economic impact on the lives of patients, as well as their families.
Our fellow match official Terry
Terry Vaughn, born and raised in Mount Vernon, Iowa, was tested as having the Huntington’s gene 14 years ago.
Terry’s refereeing career was one that took him to many places, meeting many people. A representative of U.S. Soccer from 1987 to 2012, he was a friend, mentor and referee to thousands of people.
The Terry Vaughn Academy
When Terry was not blowing the whistle, he was working with young officials in the state of Iowa, or around the U.S. He envisioned developing a Referee Academy with an education program and has hosted a referee clinic every winter since 2002.
In February 2016, the Iowa Referee Committee renamed the academy in his honor.
The Terry Vaughn Academy has welcomed dozens of FIFA referees and national referees, including Kari Seitz, Esse Barharmast, Rick Eddy, Greg Barkey and Alex Prus, to name just a few, and this is down to the friendships that Terry fostered throughout his career.
Terry’s battle with Huntington’s Disease
Now 43, Terry learned he had the gene that causes HD when he was 30. He has lost his father, both of his uncles and his grandmother to HD, and currently has two cousins that will be or are symptomatic.
But Terry never let his fight with Huntington’s prevent him from achieving his goal to be one of the top officials in the United States. He achieved this honor from 2004 to 2012.
A Major League Soccer referee for 15 years, Terry was also on the FIFA panel for nine years. He worked international tournaments, including the 2007 U20s World Cup in Canada, refereed in the CONCACAF Champions League and worked college games for more than 20 years. He is also proudly included in the NISOA Hall of Fame.
Before he achieved all of that, Terry decided he would enjoy each event to its fullest, as PRO assistant referee and Terry’s friend, Kermit Quisenberry, remembers.
“He would meet and greet everyone as if he had known them for his whole life,” the MLS match official said. “We all enjoyed him being around us, he made smiling and having a good time contagious.
“One time in North Carolina at a youth regionals event, a young boy around the age of eight came up to Terry and asked if he could get his picture taken with him.
“Terry gladly obliged, welcoming the youngster, taking pictures and presented him with a U.S. Soccer banner. I don’t know who had a bigger smile, Terry or his young supporter!”
Life after soccer for Terry
In 2012, Terry took the decision to retire from refereeing in MLS and spend time with his family. He knew that the window was slowly coming to a close so he stepped away from the professional and international game in order to focus on handling the new challenge ahead.
Terry went to see a Huntington’s Disease specialist in 2015, and he was prescribed a medication to help him with some of the symptoms.
There are good days and bad days but the key is that the Vaughn family take each day as a new day and they look to get better and stronger.
Terry’s wife, Kim, said: “This disease has taken a person we all knew as a happy, energetic person, and deteriorated him into a person that is sometimes angry at the world, and depressed. And then three hours later, is enjoying his ice cream and giggling and laughing.
“One thing that is sure to brighten Terry’s day is text messages or emails from his referee family.”
How to support a cause and our fellow match official Terry
To support Terry and to help an important cause, PRO’s officials will be wearing blue wrist sweatbands with the HD symbol on them during May, which is #HuntingtonsDisease awareness month.