Medtronic Employee Becomes Rare Disease Champion
Medtronic employee Ron Garber, whose daughter tragically passed away from the rare neurological condition 4H Leukodystrophy, has founded the Yaya Foundation to support families affected by the disease. Since its inception, the foundation has raised over $1.5 million, aided by Medtronic's Matched Giving program. Recognized by the Chan Zuckerberg Initiative, the foundation has launched significant research initiatives, including collaborations with the Broad Institute, focusing on therapeutic discovery. Garber emphasizes the importance of community support and the role of Medtronic in advancing knowledge and care for this condition.
- Raised over $1.5 million for Yaya Foundation to support families and accelerate research.
- Yaya Foundation received a Rare As One grant from the Chan Zuckerberg Initiative.
- Successful collaborative research model with the Broad Institute for therapeutic discovery.
- None.
Content warning: this story discusses child loss
NORTHAMPTON, MA / ACCESSWIRE / February 20, 2023 / Ron Garber's daughter Yaya was born with an ultra-rare neurological disease called 4H Leukodystrophy that ultimately took her life at just 13 months old.
He remembers the confusion, isolation, and fear that followed Yaya's diagnosis from a condition 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," Garber said. "I decided working in the life sciences like at Medtronic would help me do that."
He came to Medtronic shortly after Yaya's death. Now a senior legal director, Garber founded the Yaya Foundation with his wife - and, just as he hoped, Medtronic played a role.
That's because he's surrounded by expertise, he said, citing a random conversation at a team dinner that led to a milestone 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 shared his story recently on the company's internal network, hoping to spark other employees to think about why they even work at Medtronic.
"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."
Growing impact
The Yaya Foundation provides education and emotional support for families by creating videos with care guidelines, translating journal articles into layperson speak and other languages, and hosting bi-monthly support calls.
But it's also on a mission to accelerate therapeutic discovery for 4H Leukodystrophy.
The Yaya Foundation was recognized as a best-in-class rare disease patient org as a recipient of a prestigious Rare As One grant from the Chan Zuckerberg Initiative.
Through that funding, the organization executed a collaborative research model that brings together the best and brightest researchers in the field.
In just three short 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 has played a role in several important research breakthroughs, including the creation of a complex disease model that will facilitate advanced research in gene therapy.
Matched Giving brings dream to life
It's not just the mindshare at Medtronic that helps fuel Garber: The Medtronic Foundation's employee Matched Giving program was crucial to 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," Garber said. "We had enough seed funding to get the attention of our stakeholders."
Since then, many employees chose to donate to the Yaya Foundation, and the Medtronic Foundation matched every donation. With the support of Medtronic colleagues and supporters across the globe, the Yaya Foundation has raised over a million and a half dollars to provide support for families and accelerate 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."
The work is meaningful to Garber 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."
Learn more about the Yaya Foundation.
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