May is ALS Awareness Month. Known to many as Lou Gehrig’s Disease, the illness attacks a person’s muscles and nerves. Nearly 6,000 Americans are diagnosed with ALS each year.
ALS is one of 43 diseases that the Muscular Dystrophy Association covers under its umbrella.
Every day this month, the MDA is recognizing a person diagnosed with the illness on their national website. Monday’s story was that of a Wilmington man.
Port City resident Charlie Lipari was diagnosed with ALS in 2001. “It’s a big hit of reality to know to realize your life is finite. You know you always think, I’m young I’m strong, I’m going to go on forever, and then it whacks you inside of the head and it’s an eye-opener.”
Charlie said tears are sometimes hard to fight, but his family, friends, and sense of humor get him through each day. “A little something I call the clown motto; it’s a little song, a little dance, a squirt of seltzer down your pants. And that’s been my life story.”
The Muscular Dystrophy Association has recognized Charlie for his leadership.
“Charlie reaches out, he helps those who are newly diagnosed with ALS and he gives them hope,” said Amy Pollock of the Muscular Dystrophy Association.
Throughout the month of May, 31 people are telling their stories in the MDA’s national campaign promoting awareness about this devastating disease.
Once an active dad and businessman, Charlie said he’s found new direction. “I try never to dwell on what I can’t do anymore. I focus on what I’m still able to. And communicating about the illness, bringing awareness to it, I feel that’s my new calling. So that’s where I focus my energies.”
“He has a vested interest in finding a cure but he doesn’t just focus on himself for finding the cure, he’s thinking about everybody else,” Pollock said of Charlie.
The average life expectancy after someone is diagnosed with ALS is 3 to 5 years.
Charlie is a fighter. During his eight-year struggle, he’s helped put others with the illness at ease. “I tell them, be a person living with ALS, not dying from it. It’s your attitude, keep it strong, embrace the ones around you, they’re going to support you and help you through this, no matter what the end may bring.”
Charlie said he is humbled to have been nominated, and chosen to be featured on their website.
He thinks it was his sense of humor that made him stand out. You can see Charlie’s story on the MDA website.
If you would like more information or like to donate to the MDA for ALS research, you can call (910) 763-3114.