North Suburban Woman Pens Letter Expressing Gratitude And Raising Awareness About PLS -- Which Has Robbed Her Of Her Voice, But Not Her Passion

HAINESVILLE, Ill. (CBS) -- This is not the kind of story we normally bring you.

It started with a viewer's letter, written by a woman with a rare disease wanting to raise awareness about her illness. As CBS 2 Political Investigator Dana Kozlov reported Monday night, it is also the woman's way to tell her family how grateful she is for their love.

Dave Cohen serves as the voice of his wife, Lisa – as he has done for 11 years. He read aloud a letter that Lisa wrote us, wanting to thank her parents publicly for their lifetime of support.
"I want to the world to know how blessed I am," the letter said.
She credits her parents first for helping her overcome serious developmental disabilities as a child.

"She's said she's always felt like she's a prisoner inside her body," Dave said.

Now, Lisa's husband helps her life with primary lateral sclerosis, or PLS. The neurodegenerative disease has left Lisa unable to speak, and she now communicates with the help of a tablet.

Lisa also can no longer use her left hand, and her balance is shaky. But Dave and Lisa said her parents, Jerry and Cookie Hoberman, have been a rock – helping with money, doctors' appointments, and the Cohens' two children.

So we had Dave read Lisa's letter to them too. Her words, Dave's voice.

"I cannot emphasize enough that all the strength and winning spirit I have comes from my parents," Dave read from Lisa's letter. "They do so much for my special family. They are remarkable people."

The tribute was emotional for everyone.

"What a beautiful, beautiful letter," Jerry Hoberman told his daughter. "Thank you, dear."

But Lisa's letter is also her way to raise awareness of PLS – a cousin of amyotrophic lateral sclerosis or Lou Gehrig's disease.

"PLS is unfortunately very, very rare, said Northwestern University associate professor Hande Ozdinler.

Only 16 in 10 million have it, according to Ozdinler.

"Because the disease is so rare, it's very hard for drug companies to be interested in developing drugs just for PLS patients," she said.

But Lisa Cohen is determined to educate and fight for a cure, with her husband's help.

"I love my wife - whether she's got this, whether she doesn't have this," Dave said.

Lisa Cohen supports a fundraising initiative called Speak Out Against ALS, part of the Les Turner ALS Foundation. It is located at 5550 W. Touhy Ave., Suite 302, in Skokie.