“I just turned 70 years young!” exclaimed John Langley. “17 months ago I was diagnosed with ALS, but I am one of the lucky ones because it didn’t take a long time to receive my diagnosis like it does for some people.”
A lesson learned right away after living with ALS was that the disease needs lots more exposure. John’s wife Teresa advertised they were participating in the 2021 Sarasota Walk to Defeat ALS ® - Car Parade in April. In August, a family friend sent the couple an Ice Bucket Challenge video she completed in 2014. Back then John did not have ALS and they didn’t know the friend at that time; the Langleys felt grateful that someone they know made a past impact toward their present lives.
A few weeks after, a Facebook post from The ALS Association explained that the 2014 Ice Bucket Challenge helped fund AMXOO35, a promising drug treatment for ALS and other neurodegenerative diseases. After reading more into this, John thought it would be great to start the challenge up again to bring more ALS awareness and funding for research. They tied the challenge to their participation in this year’s Sarasota Walk to Defeat ALS®.
"I personally am praying that AMX0035 gets F.D.A. approval very soon. I am very hopeful that I can receive it before it’s too late!" said John.
John notes that while they don’t have any family in Florida, they have a Florida family – a group of good friends who offer love and support. On February 5th, they gathered at the Langley home in Sarasota to do the Ice Bucket Challenge. They’ve also nominated friends in different states hoping to spread their awareness across the country. Their local Winn Dixie donated ice and their local Ace Hardware donated buckets.
Help John see his desire for increased ALS awareness and research funding happen. Donate to their Go John Go! team at https://donate.fl.als.org/team/402229. We have to start again somewhere.
To find more ways you can get involved to gather family and friends to support ALS awareness and research for treatments and a cure, contact us at 813.637.9000.
Rooting for you, John and Teresa! -Carrie from Hub
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