CLEVELAND — Bob and Anita Markling understand life with ALS. Known officially as Amyotrophic lateral sclerosis, or more common as Lou Gehrig's disease, it's a progressive neurodegenerative disease that attacks cells in the brain and spinal cord. It eventually leads to muscle weakness and paralysis.
There is limited treatment and no cure.
"It's quite devastating for not only the person who has it but the family, Anita, being the caregiver, I mean it changes everybody's world," Bob says.
Bob received his diagnosis two years ago and has already experienced a decline in mobility. The couple sold their home for a ranch to prepare for the day Bob can no longer walk up stairs. They received a lift from the ALS Association Northern Ohio Chapter.
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"The northern chapter has been a godsend our hero, they're loaded with information and resources and equipment," Bob says.
They also provide support for Anita, but lately due to the pandemic her groups are now virtual.
"There's something about being there live versus over the phone, I'm thankful that it still goes on, but I can't wait for the pandemic to be over," Anita says.
Like many organizations, ALS holds an annual walk. The Buckeye Bob team will be there, only this time it will be quite different.
"Breathing is a challenge for 75% of our families, a common cold is scary, COVID is terrifying," says ALS Association Northern Ohio Chapter executive director Mary Wilson Wheelock.
This year they will hold "mini" walks. Which don't even have to be walks, just events to spread awareness while spreading six feet apart and being safe. It's an effort to keep up with fundraising at a time it's needed most.
"Quite honestly I'm actually excited because I think it's going to bring more awareness than our regular walks do because they're happening in communities all across the country," Wheelock says.
Awareness is one thing, donations another. Studies show COVID-19 has impacted the efforts of nearly 90 percent of non-profits.
"Eighty percent of our budget comes from events, we're seeing demand grow and funds decrease which is never a great recipe for success," Wheelock says.
Many programs went virtual, so did fundraising ideas. The Markling's son Ryan raised a thousand bucks playing a video game for 24 hours. The ALS Gala became a nine week digital media effort, but so far only raised 40 percent of the goal. The pandemic's economic fallout may last much longer.
"Traditionally the year after an economic crisis is worse than the year of the crisis we are certainly having to look carefully at how we spend our resources next year and how fundraising will come in," Wheelock says.
Enter unique ideas and partnerships. Steve Popovich runs Cleveland International Records and lost family members to ALS. He decided to start the Let's Rock ALS campaign. A t-shirt, koozie, mask, vinyl record and CD of CIR's most famed recording artists all available for a $50 donation.
"It's a neat little package exclusively for this purpose to help raise additional funding for the northern Ohio ALS chapter," Popovich says.
Giving people something extra for their money, a sound way to survive the pandemic and continue helping others.
- Learn more about the ALS Walk by clicking here.
- Click here to learn more about Let's Rock ALS
- Learn more about an experimental ALS treatment here.