For Component Brewing owner, Zebra Hop beer fundraiser for rare diseases is personal

Component Brewing, 2018 S. 1st St. #169, launches its new beer, Zebra Hop hazy IPA, on February 29. That also happens to be Rare Disease Day, something that affects brewery co-founder Jonathan Kowalske personally.

Shortly after opening Component Brewing with his cousins DJ and Steve Kowalske in June 2018, Jonathan's son Mac was diagnosed with Malan syndrome, a rare genetic disorder. Mac faced three brain surgeries before his first birthday.

One in 10 Americans are affected by rare disease, and one in three children with rare disease will die before their 5th birthday.

Tapping into the support of the brewing community, Kowalske asked other breweries in the Milwaukee area and around the country to create their own versions of Zebra Hop. It’s all in support of Rare Disease Day on February 29, when variations of Zebra Hop brewed by each participating brewery will be released.

This small brewery inside the Lincoln Warehouse has the capacity to brew just seven barrels at a time, yet the goal with this launch is to have national impact and raise awareness for the rare disease community.

Proceeds from the sale of the beer will go to the National Organization for Rare Disorders, the leading national nonprofit organization serving the rare disease community. Children's Wisconsin has been accredited by NORD as an official partner; all of Mac's neurosurgeries have been completed at Children’s.

One of the missions Kowalske set at Component Brewing is to address inclusion in as many ways as possible. To that end, ASL tours have been added for select dates along with menus created with adjustments for visual impairments and dyslexia. Typically you’ll find 15 draft beers at Component, plus some seltzer and non-alcoholic options.

In addition to the Zebra Hop beer release, Component Brewing is creating a Zebra Hop home brew wort to allow home brewers to participate. That wort share will be held March 3 at Truebru Homebrew Supplies, 14260 W. National Ave., New Berlin. The home-brew wort is $40, with a hops and yeast add-on kit available for $20.

For a listing of breweries participating and offering Zebra Hop, go to zebrahop.com.

Kowalske recently talked about his brewery and the Zebra Hop release.

How he went from home brew to business

DJ and Steve are brothers and my cousins. I started bringing home brew to Christmas. They were getting into brewing together. It was a common bond we had. That was right around the time Mac was born. Brewing became therapeutic to me. Getting him to go to bed was tough. When he'd go to sleep, I'd take a growler of what I made and try to get feedback. The brewery I went to most was in this building, Eagle Park. One day they were like, "Hey, we found a new place. We like what you're doing. We want someone who we think makes good beer. Do you want to buy our equipment and start your own thing?" I talked to my cousins. They said, "Heck, yeah."

How Three Floyds Zombie Dust inspired him

The beer that got me into craft beer was Three Floyds Zombie Dust. I had one in Chicago. I was like, holy cow, this is what beer can taste like? I was used to stealing Pabst and Bud Light out of my parents' fridge. That was what beer was to me. That one opened my eyes to a hoppy IPA. When I started home brewing, my focus was different hop creations and different IPAs that I couldn’t get around here. That translated to the brewery here. We’re definitely IPA-focused.

Our number one beer is Haze the Lord!, a hazy IPA. That has been tops since the beginning. Another one, our Rose’s Sour, that was named after our grandmother who lived on Chase Ave. It wasn't intended to have fruit, but I tasted it. This would be good with mango and raspberry. It came out and we looked at the color. We have to name this after Grandma Rose. This is a family business. I don't think she was ever a beer drinker, but I think she'd think it was cool that her great-grandsons named a beer after her at the brewery in the neighborhood where she lived.

Drink this beer and help others

We wanted to use our product, beer, and our corner of the world to try to spread awareness and give back a little bit. We started doing beers that gave back, calling it ‘generous pours’. We'd let a staff member, bartender or brewer, decide what cause they wanted to help, what kind of beer they wanted to make.

As an example, the first one I did was a beer called Fancy Genes, a play on DNA. We brewed that beer for a couple years to raise awareness for my son's specific disease, called Malan syndrome. We got a response. Mac is one of only 200 in the world. That was just focusing on Malan syndrome. It seemed like we could do better and cast a wider net.

I called NORD. ... We decided to try to make a more widespread project. We decided to rebrand to Zebra Hop. Zebra is the official animal of rare disease. I think we have close to 20 breweries that signed on for this, mostly in Milwaukee, but also Chicago and as far as Albuquerque, New Mexico. The brewing community has been supportive.

What is Zebra Hop?

I wanted this beer to be very open-ended. The label does say New England IPA on it. I uploaded an example recipe to the website, and I said (to the brewers) the only thing I hope you do is use an advanced process, technique, or brewing ingredient to represent advances in medical research to find cures for all rare diseases.  I want you to do what you want, because I want to try all the versions. I don't want them all to taste the same. I wanted it to be as accessible as possible, just like I want our brewery to be as accessible as possible.

This brewery thinks about more than beer

I just finished working with our video tap board to add a dyslexic-friendly font. Last year we did the Braille menu and worked with ABLE Milwaukee (Audio & Braille Literacy Enhancement). They did our whole menu in Braille. It was awesome. The beer list changes. They said it will be expensive for us to translate in Braille, but you can make it so our readers can read it. You leverage technology and adapt it, right? It is easiest to pull up on the phone.

I went to UW-Milwaukee. I thought, how else can we reach out to the community? I reached out to the Department of Education and interpreter services. They were excited because their students could get real world experience doing ASL tours. We are planning on doing one or two per semester moving forward.

Last year for Rare Disease Day, we unveiled the special needs hockey team. There is no other special needs team in the Milwaukee area. My son is on the team. He got to drop the puck at an Admirals game this month.

How home brewers and you can help

There is a separate event (March 3) at a new home-brew shop,  Truebru Homebrew Supplies. We’re going to brew wort for home brewers. It is the same as the Zebra Hop wort we are making our beer out of, and we’ll put it in a tote and bring it there. Home brewers can take it, ferment how they like, and put their own spin on it. A portion of the wort purchase will go to rare disease support as well.

This is not just for people picking up home brew. We will also have a party there as well on March 3. I’m going to do my best to get a couple versions of Zebra Hop there so people can try what others have done. We’ll have music, food, something for the kids. We partnered with Spike Brewing, the home-brew company in Riverwest. They’re donating one of their home-brew systems. It is a $2,000 value, and they'll be raffling that. The Milwaukee Admirals also donated a couple prizes. You can get tickets here at the brewery. All proceeds will be donated to NORD and rare diseases.

The party is a way to get people to come out, get a four-pack to-go and share conversations about this. There are a lot of rare diseases, but having a rare disease is not rare. There are 30 million Americans with rare diseases. You can't look at people and tell. We're pushing for awareness and acceptance.

Editor's note: An earlier version of this story incorrectly said that there was only one special needs hockey team in Wisconsin.

Fork. Spoon. Life. explores the everyday relationship that local notables have with food. To suggest future personalities to profile, email clewis@journalsentinel.com.

This article originally appeared on Milwaukee Journal Sentinel: For Component Brewing owner, Zebra Hop beer for rare diseases is personal