MILWAUKEE — A Milwaukee brewery is working to raise awareness and money to help people living with rare diseases.
The cause is personal for Jonathan Kowalske, one of the owners of Component Brewing in the city’s Bay View neighborhood.
Shortly after Kowalske opened the business with his two cousins in 2018, his son Mac was born. Mac was diagnosed with Malan Syndrome.
To put in perspective just how rare the condition is, Mac is one of only about 200 people worldwide who have been diagnosed with Malan Syndrome.
“He had three brain surgeries before he was 1-year-old to help alleviate the pressure in his brain,” Kowalske said.
Malan Syndrome causes physical and intellectual disabilities. Because so little is known about the disease, there is little funding to help uncover more about it.
There are also limited treatments and no cure.
Mac is now 6 years old, and despite any health setbacks, lives life to the fullest. He loves sports, especially hockey.
According to the National Organization of Rare Disorders (NORD), about one in 10 Americans — or roughly 30 million people nationwide — are living with a rare disease. More than 50% of those people are children.
In an effort to make life better for his son and others, Kowalske has created a beer to raise money for NORD, which researches helps advocate for people with rare diseases and advances rare disease research.
“It’s our corner of the world that we can be creative in, and do something with,” he said. “It’s cool to bring them together because they — both brewing and rare disease — are so big, so equally big in our life.”
The beer is called Zebra Hop. The name is a nod to the fact that many in the medical community refer to extremely rare diseases as "zebras."
"The zebra is the official mascot for rare disease patients. Historically, medical professionals were told that when they 'hear hoofbeats,' they should not expect to see a zebra. In other words, look for the more common answer, a horse. Now, we know that one in ten Americans is actually a zebra," NORD's website explained. "It might not be obvious when you look at us, which is why we show our stripes to raise awareness."
The design on the can of Zebra Hop features a zebra on a pogo stick that looks like a DNA strand. Kowalske said one of his favorite parts of the design is the glasses the zebra has on. They are the same blue as Mac’s glasses.
Zebra Hop is brewed with newer technology and advancements in the brewing industry. Kowalske said he did this on purpose, to correlate the need for advancement in medical care for those with rare diseases.
All of the proceeds from the sale of Zebra Hop will be donated to NORD.
Kowalske said NORD has been an organization that has has helped his family from the start of Mac’s diagnosis, and gotten him to where he is today.
“We are just trying to create awareness and raise money for research and advocacy for people with rare disease,” he said.
There are more than a dozen Wisconsin breweries that will be selling Zebra Hop.
Kowalske is launching the beer on Feb. 29, which is National Rare Disease Day.