A purple beard and failing muscles, two things that define Mifflinburg graduate Devin Ward, 51, and two things that he never dreamed would be associated with him.
Ward was diagnosed in August with ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig’s disease. Because of increased awareness, most people now know ALS is a terminal disease that causes muscles to atrophy. Eventually, even those needed for swallowing and breathing become paralyzed. Life expectancy after diagnosis averages two to five years.
“It’s such a devastating disease,” Ward said by phone from his California home, his speech just beginning to thicken as his throat muscles fail him. “It’s horrible.”
But he’s defined more by his fighting spirit — and that purple beard — than by the disease. Ward is gathering a team for the April 9th Walk to Defeat ALS, in San Luis Obispo, California, hoping to raise money for research being done by the ALS Association.
“Friends are coming all the way out here from back East,” he said, listing fellow Mifflinburg natives Judi Bitner, Suzi Latanza, and Lori Herman Weaver, as well as Ward’s brother, Darin, and three sisters, Danielle, Daniette, and Darica, all joining a team of 200. “My team is the biggest team of all the groups coming to the Walk. They’re all going to be wearing the T-shirt.”
The T-shirt features Ward’s purple beard, which came about when he was home for Christmas and his niece, Zoe Donohue, begged him to let her dye it. Little did he realize, the purple beard would help in his quest to raise awareness and funding for ALS.
“The beard has become a symbol now, so I’m going with it,” he said. “It helps to attract attention. It brought people to me. It’s been a really good way for me to advocate and educate people on the disease.”
After ALS forced Ward to resign from his position as a first- and second-grade teacher, he traveled to Germany and Japan, where he once lived for a combined 14 years, and to Columbia, Costa Rica, Thailand, and Cambodia.
“While I am still able to walk, you know, I wanted to enjoy myself,” he said.
He has fond memories of growing up in the borough, where his parents, Dr. Richard and Donna Ward, still live. Residents might remember Devin as the enthusiastic drum major of the Mifflinburg High School Marching Band from 1979 to 1982.
When the disease progresses to the point where Ward will need in-home care, he will live with his sister in Lewes, Delaware.
“Of course. No question,” said Darica Ward when asked about it. “He will live with me and my wife, Jane Donohue.”
Research so far has led to measures – speaking machines, breathing machines, etc. – that improve comfort and quality of life in ALS patients, but more research is needed to defeat the disease.
“So I’m hoping to live long enough that some kind of treatment comes along,” Ward said. “I don’t want to lose hope.”
Cindy O. Herman lives in Snyder County. Contact her at firstname.lastname@example.org or on Twitter