Using the collaborative nature of the brewing industry and advanced technology to raise awareness for the one in ten individuals living with rare disease
Proceeds will benefit the National Organization for Rare Disorders (NORD)
Five years ago, right after we opened our brewery, our family’s life changed forever when our middle son, Mac, was diagnosed with Malan Syndrome. Malan Syndrome is a rare genetic disorder caused by a change in the NFIX gene. It is characterized by overgrowth, intellectual disability, vision and/or hearing impairment, skeletal anomalies, epilepsy, and anxiety.
Knowing that we were in uncharted territory, we started looking for resources to get the most help possible for Mac. One of the resources we tapped into was the National Organization for Rare Disorders (NORD) and it has provided a support network for not only Mac, my wife, and me, but also for thousands of families and individuals around the U.S. with rare diseases. Thankfully, Mac is living his best life as a hockey-loving, sports-crazed jokester who is the best salesperson around.
This collaborative beer uses advanced brewing products and techniques to represent the advances in medicine happening now and in the future to find cures for all rare diseases. Please join us in raising awareness and funds for the 1 in 10 Americans like Mac living with a rare disease or disability. You can do so by making a donation here, by spreading the word to help educate others, and - of course - by enjoying a can of Zebra Hop and helping to bring it to the people in your community.
Want to learn more about Mac’s journey? Click Here
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Jonathan Kowalske
Component Brewing Company
Resources
Recipe, label, and branding for the beer
Recipe
This is the recipe that we at Component Brewing will be brewing. We encourage you to make the recipe your own, while still representing advances in medical technology by using modern hop/yeast products (thiolized yeast/flowable or experimental hops, etc).
If your brew schedule doesn’t allow time for a new recipe, please consider renaming, relabeling, or recreating a beer that you had already planned on brewing. Our hope is that this will make brewing Zebra Hop as inclusive as possible.
Click the link below to download our version of the recipe:
SUPPLIERS THAT HAVE GRACIOUSLY AGREED TO PROVIDE A DISCOUNT ON SUPPLIES
20% off Malteurop
Contact Nicole Henzel nicole.henzel@malteurop.com
20% off Omega Yeast
Contact orders@omegayeast.com
100% off Blue Label Printing
Contact Josh Jensen josh@bluelabelpackaging.com
Label design
Label artwork has been contributed by Robot House for anyone to use. There is one
template size; 7.5” x 5” for 16oz cans. Click below for a template label.
Label printing
Blue Label Packaging Co. will print the labels at no cost besides shipping for
participating breweries. When you call or email, let your representative know that this is for the ZEBRA HOP and they will apply the discount. Any questions can be directed to
info@bluelabelpackaging.com
or you can call 866-506-2583.
Website
The Arryved team is donating their time, talent, and technology for the design, development, and hosting of this website to support this effort. If you would like to be listed as a participating brewery, click the button below.
Promotion
Getting the word out
If you are a craft beer lover or homebrewer, please consider urging your local brewery to join the collaboration or brew your own unique version of Zebra Hop. Sharing this beer with friends and family will help create awareness for individuals with rare diseases.
Participating Breweries
Visit one of these breweries to purchase a zebra hop today
Delafield Brewhaus
Soul Brew Kombucha
Project Partners
The people who helped get this project off the ground
About Rare Diseases
A disease is considered rare when it affects less than 200,000 individuals in the United States. One in ten Americans have a rare disease. That’s about 25-30 million of our loved ones, friends, colleagues or neighbors. There are more than 7,000 known rare diseases, more than half of which affect children.. Fewer than 10% of rare diseases have treatments. To learn more about rare diseases visit NORD’s website at rarediseases.org.
Why “Zebra Hop”?
The zebra is the official mascot for rare diseases in the U.S. In medicine, zebras represent the uncommon answers, rare diseases. When a medical professional “hears hoofbeats” they are encouraged to not just assume it's a horse but consider that it could be a zebra. Despite their sharing commonalities, each zebra’s stripes are unique just like individuals with rare diseases.
About NORD
National Organization for Rare Disorders (NORD®) is a registered 501(c)3 charity organization whose mission is to improve the health and well-being of people with rare diseases by driving advances in care, research, and policy.
To learn more, visit rarediseases.org