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To Raise Awareness About A Disease, Should You Put A Ribbon On It?

Tucson Punishers pose under the MG Walk banner
(Photo by Annika Cline - KJZZ)
The Tucson Punishers youth baseball team came out for the latest MG Walk.

Remember the ice-bucket challenge?

People dumped ice water over their heads to raise awareness for the neurological disease ALS. It helped the ALS Association raise more than a hundred million dollars in just a couple months.

That’s an anomaly. Most organizations won’t find their “ice bucket challenge.” But they have to find some way to stand out if they want to raise awareness and money. Just think about the number of 5Ks Americans run for a disease or disorder. So, how do you market a disease?

The ‘Snowflake’ Disease

“One, two, three, Punishers!” members of the Tucson Punishers youth baseball team chanted Sunday.

They were pumped, like they were about to take over the diamond. But they actually were about to go for a walk — the MG Walk.

MG stands for Myasthenia Gravis, a rare neuromuscular disease that has no known cure. It’s called the snowflake disease because everyone’s symptoms are a little different. None of the players have MG. 

But one of the parents, Mike Boyd, does. He said when he and his wife found out about his diagnosis, “we both looked at each other like, what does that mean? Is that good or bad? Because we’d never heard of it before.”

And that’s the thing with rare diseases — you probably don’t know they exist until they change your life. An event helps spread the word. 

“Walks are almost a dime a dozen for all these organizations, and the reason why is because they work,” MG Walk manager Chris Mauch said.

He says this has been a big event for the MG Foundation of America in past years. But they were still figuring out their branding — what makes them stand out? This year, they’re embracing MG’s nickname — the snowflake disease.

“MGFA just rebranded their logo and colors as well, and the snowflake is now part of the logo,” Mauch said. 

But can a flurry of teal snowflakes really shake new donations out of the trees?

A Symbol Of Success — Or Failure

“You have to be able to recognize that the symbol represents the organization or the disease or the issue that it’s meant to represent,” said Terence McDonnell, a sociologist at the University of Notre Dame

McDonnell studies exactly that: how do people interpret symbols once they’re put into the real world?

“We think the things we’re communicating are being interpreted the way we intend them to be interpreted, but I find again and again that misinterpretation is common.”

McDonnell’s most recent work looks at the different outcomes of the red ribbon campaign for AIDS awareness, and the pink ribbon campaign for breast cancer. Red ribbons rose rapidly, then quickly fell out of favor, while the pink ribbon is still seen on everything from car decals to coffee mugs.

“And so usually these symbols become visible and become recognizable and become powerful symbols of movements because of the work of people putting them out there into the public sphere, more so than the actual disease itself,” he said.

There’s a discrepancy between attention paid to a disease and the number of people it truly affects. Take heart disease — it’s the leading cause of death in the U.S. and about 14 times more people die of it each year than of breast cancer. But last year, the Susan G. Komen organization raised about 380 times more in their fundraising efforts than the American Heart Association.

A lot of organizations want to raise money like Komen. But according to McDonnell, it’s not that easy.

“You can do the organizational work to give it a start, but what really catches fire oftentimes is incredibly unpredictable.”

It’s hard to tell how far the snowflakes will fall for MG patients. But Mike Boyd has been spreading the word in his own community just fine.

“We had a baseball game about a month ago, and all the boys wore teal wristbands,” Boyd said. “And the other team asked about it, and they ended up doing a prayer at the end of the game for me.”

And recognizing the disease from its wrist bands, ribbons or snowflakes is the first step in doing something about it. 

Annika Cline was a producer for KJZZ's The Show from 2014 to 2019.