Six years ago, Jonathan Kowalske’s son Mac entered the world – and the family suddenly found themselves thrust into the rare disease community. Soon after birth, Kowalske and his wife noticed that Mac had a slightly larger-than-average head. They brought their concerns to the doctors but were told that there was probably no real issue. Yet Mac’s health problems continued; he was a fussy baby and vomited often. Eventually, Kowalske’s wife pushed doctors to run additional tests and imaging. Mac underwent three brain surgeries and genetic testing before he was one year old. Soon after, the Kowalske family learned that their son had a rare genetic disorder called Malan syndrome.
Caused by NFIX gene mutations, Malan syndrome is a part of disorders known as overgrowth syndromes, in which there is faster rate of growth in any area of the body (including bone, skin, organs, and muscles). Symptoms, which include macrocephaly (a large head), muscle weakness, seizures, motor and speech delays, and scoliosis (among others), often appear in infancy.
Raising Rare Disease Awareness: A Beer-y Good Mission
When he looked at his son and his family, Kowalske knew that he would do anything to ensure that Mac had a good, fulfilling life. And he has: the 6-year-old, despite his regular specialist visits and daily medications, loves playing soccer and chatting with new people. To continue working towards a better future for Mac, Kowalske decided to support rare disease awareness through one of his greatest passions: beer.
Kowalske is the owner and founder of Component Brewing Co. in Milwaukee. He decided to leverage his knowledge and platform to make a change. Over the last few years, Component Brewing Co. released Fancy Genes (6.1% ABV), a New England Style IPA with lactose and Mosaic/Loral/Equinox hops. Each purchase helped fund research into Malan syndrome, with the funds donated to the Malan Syndrome Foundation.
But Kowalske soon recognized the need for broader rare disease research funding. Component Brewing Co. is now planning on releasing Zebra Hop on February 29, 2024. As Kowalske explains, 2024 is a leap year, making February 29 a rare day. Rare Disease Day will also be held on February 29, as it is normally held on the last day of February. So what better time to raise rare disease awareness?
Zebra Hop will sell for $15-20/4-pack and proceeds will go to the National Organization for Rare Disorders (NORD), a Patient Worthy partner. While this is an amazing endeavor on its own, Kowalske hopes that other breweries will continue getting involved by creating their own Zebra Hop. On the Zebra Hop website, Kowalske shares the Zebra Hop recipe for brewers, as well as discounts on supplies from Blue Label Packaging, Malteurop, and Omega Yeast.
