Beside the need for more funding for research, Steve and Suzanne Heronemus want more people to understand this devastating disability.
Steve Heronemus recently turned 50. Five years ago he began to experience muscle twitches in his arms.
"The first doctor said, 'It's really nothing, don't worry about it. Call again if anything changes.' Well, a year later I noticed, not only were the twitches not going away, but I was starting to drop things and have weakness in my right hand. So I went to a different doctor, and after a few tests he came out and told me, 'You're dying'," Steve said.
In 2008, Steve starting falling and had to use a wheelchair.
"That was very difficult for me to accept, and I still will walk around with assistance as much as I can," said Steve.
Determined to stay as independent as he can, Steve continues to work full-time as an IT consultant, with accommodations.
"They have been very supportive in allowing me to work at home, to get me computer resources and get me voice recognition software so I can use the computer without using my hands," Steve said.
Situations like this are difficult.
"I have some acquaintances and friends who don't talk to me very much anymore because they are uncomfortable with the situation," said Steve.
Maintaining an upbeat and positive environment is challenging, says Suzanne.
"We have to face the day in the best way we can," Suzanne said. "I've got four kids. Their lives have to be as normal as possible. The disease has already stolen so many things from us; I will not let it steal anymore from my children than it has to take away."
The Heronemus family wants more effort put into ALS.
"I would like to see blue and white ribbons out there as much as I see pink ribbons," said Suzanne. "I would like somebody to see that and say, 'Oh, that's ALS, and we are going to buy this product and support this sponsor, this corporation because they're willing to put money out there for a cure.' I'd like to hear people talking about it."
Steve and Suzanne are active in the Les Turner ALS Foundation. For more information go www.lesturnerals.org.