Noel Valero’s efforts to spread the word about the American Dystonia Society landed him — unexpectedly — on television for an episode on the Oprah Winfrey Network’s Mystery Diagnosis last month.
Now the awareness effort will take on a local stage, as the West Windsor resident will speak at a Dystonia Awareness benefit dinner and silent auction on Friday, March 18, from 6 to 10:30 p.m. at the Colonial Club at Princeton University.
Valero, 50, who lives in Sherbrooke Estates with his wife, Dawn, has spent the past few years organizing an awareness movement and funding for research of the disease, called multifocal dystonia, a chronic condition that causes muscle spasms and contractions and can be very painful.
Valero was diagnosed with the neurological condition in 2007 but first noticed a tic in his eye in 1999. The symptoms of spasms, pain, short-term memory loss, and trouble focusing came later. When he was diagnosed in 2007, doctors told him he would be disabled within five years and die soon afterward.
“This is the most virulent form of dystonia, with the shortest life expectancy after onset,” he said. However, doctors believe his condition has plateaued. He says he plans “to be around a while.”
Now Valero is proactive in his efforts to spread awareness and raise money for research into the disease. After having been active in patient support groups since 2007, he founded the American Dystonia Society (ADS) in 2009.
“Without awareness, it is going to be hard to get donations no matter what you do,” Valero said in a September interview “It’s all a matter of spreading the word.”
Valero was born in the Philippines and came to the United States in 1970 when he was 10 years old. He grew up in Hollywood, CA, where he graduated from Hollywood High School in 1978. His father was a trained architect/civil engineer, while his mother had worked as a pharmacist in the Philippines. In the United States, though, they worked as an architectural draftsman and file clerk because they did not have the money or time to get licensed.
Valero’s wife, Dawn, grew up in Stirling, NJ, and the couple was married in 1983 between her sophomore and junior years at Princeton, where both Valero and his wife majored in mechanical and aerospace engineering. Valero earned his bachelor’s and master’s degrees in 1982 and 1986, while his wife earned her bachelor’s degree in 1985 and her master’s in applied mechanics from CalTech in 1987.
Valero went on to become a mechanical and aerospace engineer, designing spacecraft and satellites for the U.S. Air Force and Lockheed-Martin before leaving the corporate world in 1996 to devote more time to his family and focus full-time on the IT consulting business he founded in 1991. He operated the business until 2006, when dystonia rendered him unable to function for more than a couple hours a day.
His wife is an engineer and marketing director for Applied Aerospace Structures Corporation in Stockton, CA. Although she has worked from home since 1999, she travels back to Stockton often.
The family moved to West Windsor in 1990, where Valero became quite active in youth sports, coaching soccer, baseball, softball, basketball, and lacrosse.
The couple’s daughter, Alina, graduated from High School South, Class of 2007. After graduation from Emory University in May, she will be working for Bloomberg Financial. Their son, Eric, graduated from South in 2009, where he was named to the All-State Lacrosse team. A student at RPI, he is playing men’s lacrosse and majoring in mechanical engineering. Both have made the dean’s list at their schools.
Valero served on the board of Lightning Lacrosse from 2001 to 2005 and was a lacrosse official from 2004 until 2006, before the dystonia got to be too bad, he said.
He was also active in the Girl Scouts, serving as cookie mom for his daughter’s troop, and was the assistant director of the Girls Dance Team at High School South from 2005 to 2007.
While he is not currently active in sports because of his condition, Valero spends his time teaching at Princeton, “where I lend my engineering expertise to undergraduates taking the design classes,” he said. He spends two days a week helping teach the lab portion of the class.
Valero also takes photos at sporting events and games and sells the photos as a fundraiser for his foundation.
In addition, he tends to a rose garden in his backyard as part of therapy that helps him deal with his condition. “I needed to do something outdoors, and the rose garden gave me something that was challenging enough,” he says.
In addition to his own hobbies, Valero works hard for ADS, which is run by volunteers, with the goal of raising $10 to $25 million annually within 10 years. Valero also continues to raise awareness through his website and his episode on Mystery Diagnosis.
The episode on Mystery Diagnosis had another WW-P connection. Caitlin Burke, a West Windsor resident and graduate of North’s Class of 2004, was the producer. Her brother and Valero’s daughter knew each other before their class split between Grover and Community Middle Schools.
Although Valero says that he was initially reluctant about going on television as the focus of the episode, he had to practice what he preaches about raising awareness. “I’ve always told people, ‘Go out and tell your story, go raise awareness.’ The little things to raise awareness might lead to bigger things.”
Next up for Valero is his featured speaking role at the inaugural dinner, where he will present the current state of Dystonia research. He will also speak about his experience on Mystery Diagnosis as well as the treatments he receives in New York City every 13 weeks.
Items at the silent auction include four field level seats for a New York Mets game in May; an autographed poster of NY Jets wide receiver Jerricho Cotchery; an autographed poster of NY Giants quarterback Eli Manning; Princeton Lacrosse game jerseys; Rennselaer Polytechnic Institute hockey game jerseys; art prints; a case of wine from the Tiger Inn atPrinceton University; three 16×20 photos from the “Images of Winter 2011” collection; 11×17 photographs; custom non-prescription sunglasses from Montgomery Eye Group; a gift certificate for a one-hour massage/facial spa service or a hot stone massage at Massage Envy; and commemorative pictures of the New Jersey Devils 2000 Stanley Cup championship and the New York Yankees in 2002.
To see or purchase Valero’s photographs, visit https://dystonia.photoreflect.com.
Benefit Evening, American Dystonia Society, Colonial Club, Princeton University, 40 Prospect Avenue. Friday, March 18, 6 p.m. Dinner and auction to raise awareness for Dystonia, a neurological disease. Noel Valero, Princeton, Class of 1982, founded the organization to reach out to people like him who suffer from dystonia, the disease he was diagnosed with in 2007. As the featured speaker, Valero will present the current state of dystonia research and talk about his recent experience on television’s “Mystery Diagnosis.” Register. $60. 310-237-5478. www.dystonia.us.
