Show your stripes and race for rare!

Show your stripes and race for rare! Give Back in 2021 – Sign up for the ZEBRA RACE FOR RARE!

Rare Village Foundation was founded by two rare disease moms, Gina and Kacey.  I met Gina several years ago when she first moved to the Dallas area for the incredible medical opportunities here. Gina is the mom of an adorable, sweet boy everyone calls Jojo, diagnosed with Batten disease at age 5. Learn more about her story and Batten disease at

The Rare Village focuses on serving rare families in their most important journey – that of their rare disease. Gina and Kacey have established non-profit foundations in pursuit of gene therapy treatments to save their sons, and future children facing the same diseases. They have learned about the process of working toward a clinical trial in partnership with foundations, institutions, and manufacturers.  They want to share that knowledge and their journey with any rare family that may benefit.

Why Race for Rare?

The Rare Village Foundation’s Zebra Race for Rare directly benefits kids with rare diseases. Show your stripes and race for rare!

Rare disease day is February 28th and this run benefits Rare Village – an organization inspired by Jojo and other awesome rare kids – you can help change the outcome!

The ZEBRA race for RARE is a Virtual 5K Runner/Walker/Roller/Couch-Potato Run.

Join the virtual race for rare disease! Here are the steps:

  1. Register for the race to support rare disease as an individual or a team at
  2. Check your email for details on how to set up your team fundraising page
  3.  Invite your friends to join you!
  4. Start raising funds for your rare disease non-profit!
  5. Run (or think about running) any day in February, post your photo showing your stripes and run-time!
  6. Virtual team awards announced February 28th on the web-page!

Don’t forget to check the mail for your t-shirt!


The zebra is commonly known within the rare disease community as the mascot for rare disease. In the 1940s medical professor Dr. Theodore Woodward made the statement to his interns,

“When you hear hoofbeats, think of horses not zebras.”

This quote has been shared in the medical community for decades to guide doctors to look for the most common medical conditions first – but for rare and ultra-rare disease families we really are the zebras!

Every zebra has unique stripes, just like every person with a rare disease can have a unique mutation and unique rare life. We are proud of all of our one-of-a-kind rare kids, families, and supporters who show their stripes to care about rare!

Show your stripes and race for rare!


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