Feb. 29th is Rare Disease Day worldwide, the rarest day of this year. However, despite the name, rare disease is not as rare as you may think — it affects one in 10 Americans, and more than half impacted are children.
Rare disease directly impacts local brewery owner Jonathan Kowalske and his family. His son Mac was diagnosed with Malan Syndrome, a rare genetic disorder, shortly after Kowalske opened Component Brewing with his cousins five years ago.
"[Mac] is one of 200 in the world that have this rare disease, and with Malan Syndrome he has multiple physical and cognitive disabilities," Kowalske explains.
Before the official diagnosis was reached, Mac had three brain surgeries all before he turned one to treat hydrocephalus. However, when his son wasn't improving significantly, Kowalske and his wife had to keep advocating for Mac and navigate the healthcare system to find more resources.
Kowalske says that part of their lives was "terrifying," and gives credit to his wife as the one who kept pushing for answers. "She was the one who recognized that he wasn't just a 'colicky' baby and we needed to just let him 'grown out of it.' She had the mom intuition to push the healthcare system to do more testing," he notes.
The Kowalske family saw many specialists and eventually had genetic testing done after Mac's multiple surgeries. He was officially diagnosed with Malan Syndrome at 18 months.
"Once we got his diagnosis it was trying to work with the team at Children's [Hospital of Wisconsin] and gather as much information as we can and continue to get him the help he needed moving forward in life," says Kowalske.
His son Mac does a combination of physical, water, horse therapy and more. Kowalske says Mac especially loves to play hockey with the SHAW Specials team. "We really try to push him to continue to develop," he notes. You can read more about Mac's story here.
Since the patient numbers battling a rare disease are small, expertise and research funds are lacking, yet desperately needed. So to help increase awareness and raise funds, Kowalske crafted a limited-edition beer called Zebra Hop hazy IPA. The zebra is the official animal of people with rare diseases, and the zebra on Component's label has Mac's signature blue glasses. All of the proceeds of the beer will benefit the National Organization for Rare Disorders (NORD) to help other patients and families living with rare disease.
Since we started the brewery I wanted to try to use beer for good.Jonathan Kowalske, Component Brewing
"Since we started the brewery I wanted to try to use beer for good," explains Kowalske. Component had been making a beer for Malan Syndrome specifically, but "we wanted to make it bigger. So this year we started working with NORD, and changed the name to 'Zebra Hop' and invited all breweries to join in with us to brew it," he adds.
Kowalske developed the recipe for Zebra Hop himself, which is a double New England hazy IPA. He says that the recipe uses advanced hop and yeast products to symbolize the advances in medical research for finding a cure for rare disease.
About 20 other breweries are making Zebra Hop either using Kowalske's recipe or developing their own. "I know we're all competitors, but we're definitely more collaborators than competitors," he says. "Everybody is here for the same goal, to help make craft beer more prominent ... I'm very happy and humbled by how many breweries did want to do this with us."
Component Brewing will host a Zebra Hop Release Party on Rare Disease Day, Feb. 29. There will also be another event, the Zebra Hop Beer Release, Block Party, and Fundraiserin New Berlin, Wis. on March 3.
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