IN COLUMNS, LIVING WELL WITH ALS – A COLUMN BY DAGMAR MUNN.
Are you ready? Then let’s GO! We can climb a mountain, walk a mile, drink a beer, or just shop online — all to raise money for ALS.
In the U.S., the month of May traditionally has been designated as ALS Awareness Month. In the U.K., where ALS is referred to as motor neuron disease (MND), June is awareness month. But after reading all of the announcements on the internet, I think the entire summer has been hijacked! May, June, July, and beyond — all are filled with a variety of events and promotions to appeal to a wide range of interests. This is especially so when compared to what existed only a few years ago.
We’ve come a long way baby!
Back before the popular Ice Bucket Challenge in 2014, we had the Jerry Lewis MDA Labor Day Telethon. This annual fundraising event for the Muscular Dystrophy Association (MDA)began in 1956 and was the only visible event bringing awareness to neuromuscular diseases. Even though the show raised billions of dollars for the MDA, and ALS fell under the MDA’s umbrella of diseases, the telethon itself tended to feature childhood neuromuscular conditions. ALS was rarely highlighted or even mentioned. The final show aired in 2014.
The same year, the Ice Bucket Challenge went viral. Its success boosted funding for ALS so much that fundraisers have since searched in vain for the next latest-and-greatest “thing” to rally behind.
But maybe we don’t need one big idea, but a lot of little ideas that appeal to a lot of people.
Marathons, skydives, and fire walks
Leave it up to human ingenuity to create unique events that are both challenging and fun.
Marathons abound, as do swimming and walking events. Just scan the lists on the websites of the ALS Association and the MND Association. Or use the search words “ALS events.”
For the more adventurous, you can raise money for the MND Association by joining the “Great Wall of China Trek” or the “Inca Trail to Machu Picchu Trek.” The MND Association will even provide banners, balloons, and signage to bring along for photo opportunities along the way.
But you can still experience the warm glow of philanthropy through less exotic choices in which retailers do the donating for you.
From beer to coffee to online merchandise
Do you like to drink beer? Then check out Ales for ALS, a program in which participating breweries receive a special hops blend free of charge. For each pint sold, $1 is donated to the ALS Therapy Development Institute.
Hop farmer Cheryl Hanses has the gene that causes ALS. Nine of her family members have had it, too. Cheryl and her husband created Ales for ALS to enlist the help of hop growers and brewers to raise money for ALS research.
In 2017, over 140 participating breweries raised more than $1.7 million. Check this websiteto see if your local brewery is serving Ales for ALS.
How about a good cup of coffee?
For the Dutch Bros Coffee chain, the first Friday in May (May 4 this year) is designated as “Drink One for Dane” day. On that day, all locations will donate to the MDA proceeds from every drink sold.
“Drink One for Dane” began when Dutch Bros co-founder Dane Boersma was diagnosed with ALS in 2005. The company lost him in 2009, and employees continue to honor his legacy through this fundraiser.
To date, the company has donated $2.5 million dollars to the MDA.
Or you could just go shopping!
At Amazon.com, the AmazonSmile Foundation offers customers an easy way to support specific charities. I found over 125 charitable organizations listed that were affiliated with ALS.
Having AmazonSmile donate 0.5 percent of the purchase price of eligible items is such a no-brainer that I think everyone should activate this option.
So, this summer, let’s all join in — join a walk, a promotion, or just spread the word. Let’s keep the pressure on so that we can live well WITHOUT having to live with ALS.