The biggest issue in finding a cure for those diseases is there are so many unknowns, including how and why it starts.
However, the ALS Therapy Development Institute is working on getting the answers and finding a cure.
This Saturday, Aug. 28, Darlene has planned a golf tournament to help raise money for the nonprofit research organization.
"It takes $3 billion to get a new drug to market," she explained. "From the time that you go down the cellular level with the disease and you go through clinical trials, come up with the medication, and get it to market."
Although Darlene said the tournament could have been used to benefit only Roger, she instead took in the bigger picture.
"There's a lot of events to raise money for particular people," she said. "But, the bigger picture is we need money to fight the disease."
The tournament has already received enough teams, however, people can still come and support the fundraising efforts.
From 12 to 2 p.m., music will be provided for entertainment at the Harmony Golf Club in Port Kent. There will also be a plaque at the tournament with the names of the 25 people in the area who have died from ALS. There is enough space for 40 names, and it is Darlene's goal to have some answers and a treatment before reaching 40 people.
"The reality is it could happen to anyone. Any family," said Darlene. "I think until we find some answers, every single one of us could be impacted by this disease."
For more information about ALS research, visit www.als.net. For more information about the tournament, contact Darlene at 643-0808. To make a monetary donation, checks may be made payable to ADKYP and mailed to Darlene at 976 Fuller Road, Peru, N.Y. 12972.