Teams prepare for April 11 Walk to Defeat ALS

After she was diagnosed with ALS, Christina Greenstein could not lead the active life she had before the onset of the disease. 

The Lakewood Ranch resident says she normally stays in her home, with one of her major pastimes being reading. 

However, along with her supporters and family members, she is awaiting the chance to attend the Walk to Defeat ALS, which will be held April 11 at Payne Park. 

"I get to see people that I haven't seen for a while," she said. "That's nice."

It's also a meaningful occasion for her family as they work to raise funds for resources and research.

According to event organizer Ashia Zayas of the ALS Association, last year's walk had over 400 in attendance, with 37 teams, some of the highest numbers she has seen in three-and-a-half years with the organization.

"We're excited and hoping to grow that this year," she said. 

Participants in the 1-mile walk will make one lap in honor of those with ALS, and one in memory of those who have died from the disease.

The funds benefit resources and research for the progressive neurodegenerative disease, also known as Amyotrophic Lateral Sclerosis or Lou Gehrig's disease, which leads to paralysis and is fatal.

Last year's walk raised $92,318, and Zayas says this year's goal is $90,000.

"Right now, our main mission is to make ALS livable, meaning that hopefully, no one's passing away from the disease, but they're still able to live with the disease, and then, of course, eventually as well, find a cure, so no one has to go through this," she said.

She says initiatives that will be funded include support groups; resources, such as an equipment loan program that provides families with the free use of items like an electric hoyer lift; and research opportunities. 

The research explores different aspects of ALS, she says, including why it happens, as well as drugs with the potential to slow progression.

She notes that every person experiences ALS differently. 

Greenstein had long suspected she would have the disease. She has a hereditary variation that is thought to include only to 5 to 10% of cases. Her grandmother, aunt and two cousins all died from the ALS, and her sister currently has it. 

Her husband, Steve Greenstein, says when she was diagnosed, it was probably an affirmation of what she had thought for a long time. 

"I remember her walking out of the neurologist's office like the champ she is, and she says, 'I've got it, and we're going to do our best from here on out,'" he said. 

"I have three children and five nieces and nephews, and they all have a 50% chance of getting ALS, and I want to make sure they don't go through what I'm going through," Christina said. "I want a cure for this thing. I thought when my mother died of it in 2001, that when I finally got it, there would be a cure. But there isn't."

At last year's walk, she was part of a team that involved over 60 people, which became the event's top-fundraising team. Her family hopes for a similar turnout again. 

Courtesy image

Zayas says her desire to help combat the disease is related to the greater risk it poses for military veterans.

"My dad served, and so anything that has to do with veterans always hits very close to home for me, and it's something that I'm passionate about," she said. 

She hopes the walk will help the community to realize the resources that are available, for they are always improving.

The event will also feature a live band, with a kid zone and face painter, and it is family-friendly and dog-friendly.  

"It's just an incredible time to come out and see the support that people have for their family members, for their friends, for those who are currently living with the disease and fighting it, and those who have passed, and it just really means a lot to them," Zayas said. "It's a special time for a lot of people."