At a CSL Behring patient advocate summit last week, Annette Gregory told the story of her college-age daughter, Baylee, who has a rare disease.
“She’s my zebra and my hero,” Annette said.
That’s not just a cute nickname. People who have rare diseases, including the community of patients who have primary immunodeficiency diseases (PI) like Baylee, call themselves zebras. The Immune Deficiency Foundation (IDF) has adopted the zebra as its mascot. TZ! The IDF Zebra appears at fund-raising walks and even has Instagram and Twitter accounts.
Because it’s World PI Week, we wanted to learn more about how the zebra came to represent those who have 350+ rare, chronic disorders affecting the immune system. IDF President and CEO John G. Boyle agreed to answer our questions. The story begins with a quote from a medical school professor in the 1940s, who advised medical students “when you hear hoof beats, think horses, not zebras.”
How did this common sense approach fall short for people who have rare diseases, such as PI?
“When you hear hoof beats, think horses, not zebras” may have been good advice back in the 1940s, but it’s not the best advice today. It’s advice for managing populations but not for caring for individuals, and it certainly doesn’t apply to those who have rare, sometimes complicated diagnoses, like people with primary immunodeficiency diseases.
How has the zebra mascot helped spread the word and improve awareness about PI and rare disease?
The Immune Deficiency Foundation launched THINK ZEBRA!™ in 2009, and the PI community has truly embraced the concept over the years. People identify with the zebra. For a community who may have felt isolated because of their diagnosis, calling themselves zebras is meaningful and empowering. Children really enjoy the zebra, and it helps them feel like they are not alone - they have a “herd.”
Do you have a favorite zebra mascot story? We enjoyed seeing the zebra decorate the IDF office for the holidays and post on Twitter for Valentine’s Day.
In 2014, IDF introduced TZ! the IDF Zebra, our official mascot, during IDF Walk for PI, our national walks held across the country each fall, and crowds were so excited to see TZ. It’s incredible to watch children - young and old - meet and take photos with TZ. We’ve even had TZ participate in story time during our youth program at an IDF Retreat, and the children quietly sat down with the zebra just like TZ was a friend.
