Medtronic employee Yaya Garber champions rare diseases cause

Yaya Garber, Ron Garber's daughter, was born with 4H Leukodystrophy, an ultra-rare neurological disease that took her life at the age of 13 months.

He recalls the confusion, isolation, and fear that accompanied Yaya's diagnosis of a rare disease with only 300 to 600 known cases.

“After she died, my wife and I decided we wanted to do something so parents don’t have to figure it out on their own,” said Garber. “I decided working in the life sciences like at Medtronic would help me do that.”

He came to Medtronic soon after Yaya died. Garber, now a senior legal director, founded the Yaya Foundation with his wife, and Medtronic played a role, just as he had hoped.

That's because he's surrounded by experts, he says, citing a chance conversation at a team dinner that resulted in a significant breakthrough in his foundation's research.

“There are just thought partners everywhere you look who have amazing knowledge and are willing to help,” he said. “I’ve learned so much about healthcare and therapy discovery from my colleagues at Medtronic, and I’ve been able to put those learnings to work for the 4H Leukodystrophy Community.”

He recently shared his story on the company's internal network in the hopes of inspiring other employees to consider why they work at Medtronic in the first place.

“It’s important for us to remember the Mission,” he said. “It’s easy to lose our sense of purpose when we stop talking about patients.”

The Yaya Foundation educates and supports families through the creation of videos with care guidelines, the translation of journal articles into layperson speak and other languages, and the hosting of bi-monthly support calls.

However, it is also on a mission to speed up therapeutic development for 4H Leukodystrophy.

The Chan Zuckerberg Initiative recognized the Yaya Foundation as a best-in-class rare disease patient organization by awarding it a prestigious Rare As One grant.

The organization used the funding to implement a collaborative research model that brings together the best and brightest researchers in the field.

In just three years, it has launched a data collection program in collaboration with the Broad Institute of MIT and Harvard, hosted several family and scientific meetings, and contributed to several important research breakthroughs, including the development of a complex disease model that will aid advanced gene therapy research.

Not only does Garber benefit from Medtronic's mindshare; the Medtronic Foundation's employee Matched Giving program was instrumental in getting the Yaya Foundation off the ground.

“We could have been just a mom and a dad saying, ‘hey we want to make the world better,’ but the match made us a mom and a dad with funding,” said Garber . “We had enough seed funding to get the attention of our stakeholders.”

Since then, many employees have chosen to donate to the Yaya Foundation, and every donation has been matched by the Medtronic Foundation. The Yaya Foundation has raised over a million and a half dollars with the help of Medtronic colleagues and supporters all over the world to help families and accelerate the discovery of 4HL Leukodystrophy therapies.

“It feels good to bring hope to families like ours,” he said. “In short, we’re trying to change the world for people like Yaya.”

Garber is moved by the work in more ways than one.

“Grief creates a lot of energy,” he said. “Caring for Yaya took good energy from us and there was no channel for me when she died. This work allows me to feel like I’m still Yaya’s dad, and she’s still a part of my life.”