Jonathan Kowalske, rare disease Dad and co-founder of Milwaukee’s Component Brewing Company, has created a national campaign in partnership with the National Organization for Rare Disorders (NORD) to raise awareness and funds for rare diseases in honor of his son, Mac. It’s a signature beer inspired by our community, Zebra Hop, coming soon to a brewery near you.
Tell us about your son, Mac, and his personality.
Mac is 6 years old. We like to call him the Mayor because everyone around town knows him. He loves to play hockey, jump on the trampoline, and swim. Mac also loves to tell jokes and be the comedian in the room.
Mac is one of approximately 300 people worldwide living with Malan syndrome, a rare genetic overgrowth syndrome. What has that diagnosis meant for you and your family?
We weren’t sure what to make of it at first because there’s so little information out there about Malan Syndrome. We were relieved that he finally got a diagnosis, but we also knew that it was just the tip of the iceberg on his journey. Since then, advocating for him, advocating for inclusion, and making sure he has access to the correct treatment and therapies have been top priorities for us.
How did you come up with the idea to use your brewery and brewing skills for rare disease advocacy?
We always try to figure out creative ways to use beer to raise awareness and bring people together. We want to be able to use our platform to start conversations that may not have come up otherwise. For Zebra Hop, we are urging breweries to come up with their own unique recipes but use some sort of advanced brewing product in their process. The advanced brewing products represent advancements in medical research to help find cures for all rare diseases.
Why did you choose the National Organization for Rare Disorders (NORD) as a partner to receive a portion of the proceeds?
I liked how NORD put a lot of effort into promoting Rare Disease Day. We’ve registered on the website for our Rare Disease Day events in the past. The Rare Disease Day events we’ve done in the past have focused strictly on Malan syndrome, Mac’s genetic disorder, but I thought the campaign could be more effective if we cast a wider net and tried to raise awareness for everyone with a rare disease. Since starting the campaign, I’ve connected with other parents and people with various rare diseases across the country. They have all asked how they can help and be involved in the project.
What is your ultimate vision for this campaign?
To raise awareness and funds for individuals with rare diseases nationwide. Sharing a beer with new friends has always been a great way to spark conversation. Since we’re in the beer business, I’m hoping we can use our platform to help start some of these conversations. We’ve gotten quite a few breweries to sign on and brew Zebra Hop—nearly 20 so far. I’m hoping we can continue the momentum and get even more breweries to sign on to help support NORD.
What do you want individual people to do right now?
Urge anyone that you know in the brewing industry to participate to bring Zebra Hop to their local brewery and raise money to NORD to help those with rare diseases like Mac, and contact your local craft breweries using the resources on our website. Even if the beer is not ready by Rare Disease Day 2024, we want breweries to join us all year long. Watch the website for a homebrew recipe as well!
Visit ZebraHop.com to learn more about Jonathan and Mac and to bring Zebra Hop to your city!
You can also make a donation to Jonathan and Mac’s fundraising campaign for NORD here.
