PORT KENT - While many people think of cancer as the current epidemic, Darlene Long believes it's actually motor neuron diseases.
Darlene's husband, Roger, was diagnosed with Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease in May 2009. Since his diagnosis he is now in a wheelchair, with severe weakness in his arms and hands. Darlene has been doing a lot of research about ALS, coming across some interesting findings.
While typically only one person for every 100,000 get ALS, Darlene has noticed the numbers are much higher in Clinton County, and parts of Essex County.
"There's a lady that we met who is the eastern coast representative for the ALS [Association]," Darlene said. "She definitely said they know there's a pocket here, they just don't know why."
However, Darlene has learned Dartmouth University will be doing a study to check out the water basin.
"They think that there may be a bacteria that's found along our lake," she said. "That same bacteria is found in Guam, where five percent of the world's cases are."
As Darlene has learned more information about ALS, she has also searched for specific cases in the area, coming across 25 people who have died from it since the 1980s.
"But, the bulk of the names, the majority of them, probably three-quarters, are from 2001, on," she said. "So, this last decade has seen the most of them."
Darlene also came across some interesting information on medical shows, which state motor neuron diseases will actually become the epidemic of the 21st century.
"Cancer was considered the epidemic of the last century, the 1900s," she explained. "We've seen enough medical shows ... they figure they're going to have it beat by 2016. They are so close with being able to eliminate it."
The new epidemic of motor neuron diseases include Parkinson's, Alzheimer's, Frontal Lobe Dementia, and ALS.
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.