25th Anniversary of the ALS Network’s Monterey Bay Walk & Roll to Cure ALS

MONTEREY, Calif. (KION-TV) — Raising awareness for a deadly disease.

Hundreds gathering in Monterey Saturday for the 25th annual Monterey Bay Walk and Roll to cure ALS.

The atmosphere was electric in Monterey, over 240 people participated in Saturday's walK, which aims to highlight the urgent need for research and awareness surrounding ALS.

"ALS is a fatal neurodegenerative disease whereby the brain loses the ability to talk to the voluntary muscles, and therefore people who are diagnosed lose the ability to move their limbs, to talk, to walk, to swallow and eventually to breathe," Asher Garfinkel vice president of community outreach said. "Life expectancy from diagnosis is usually about two to five years."

Currently, there are no cures for this deadly disease, making the mission of the ALS Network all the more critical.

Roger Cornia has had ALS for 3 and a half years.

"I've had slow progression, and started in my legs and my hands, and has slowly come up my body, so it is picking up a little bit of momentum as I get closer, and it's just real hard to make the adjustments of your mobility, your isolation," Roger Cornia said. "I just want to see a lot of resources go to people to help them improve their quality of life through that time, because it is a very traumatic experience for the whole family, and they should have support."

Roger's wife Paula has been his caregiver.

"I'll be honest, a real beating, because they have to do everything," Cornia said. "It can take four hours to get somebody out of bed and ready for the day and ready for the day needs to kind of sit and do some simple tasks, but it's, it's a real burden on everybody, and it takes a lot of caregivers."

Advocates say events like these are not only necessary to raise funds to find a cure.

"Because until there are better treatments, until there are cures, the proven best thing for people living with ALS is multidisciplinary care," Garfinkel said.

They're also critical to raising support for those living with ALS, because the disease can take a huge emotional toll. 

"ALS is an extremely isolating disease, because people lose the ability to move and to communicate, and it's important for people to come out and to see that they are not alone with this disease that others are going through with it," Garfinkel said. "Others, there are resources here, right in Monterey to help them with their progression and to make their journey with ALS a little easier."

Approximately 10% of ALS cases are hereditary and military veterans are diagnosed at nearly double the rate of the general population. 

"Before we find a cure, we have to have people really get support for all that it takes to have any quality of life, and that takes resources, because they need medical care, they need wheelchairs," Cornia said. "They need their home remodeled, they need a van, and they need prescriptions."

Saturday's event raised $29,000 towards its goal of $50,000.

If you'd like to donate, click here.