Imagine winning $180 million. For most people, that’s a daydream about yachts and early retirement. For Paul and Sue Rosenau, it was different. It was heavy.
On May 3, 2008, Paul Rosenau bought a Powerball ticket in a small town in Minnesota. He didn't know it then, but the timing was almost eerie. That specific date marked exactly five years since their two-year-old granddaughter, Makayla, had passed away from a rare, brutal condition called Krabbe disease.
When the numbers flashed on the screen, they didn't just see dollar signs. They saw a chance to fix a world that had failed their granddaughter.
The $180.1 Million Ticket and a Heavy Legacy
Paul and Sue Rosenau weren't "lottery people" in the typical sense. Paul was a construction supervisor, and Sue worked as an administrative assistant at the University of Minnesota. They lived a quiet, rural life in Waseca.
The jackpot was massive—$180.1 million. They chose the lump-sum cash option, which, after the taxman took his share, left them with about **$59.6 million**.
Honestly, they could have disappeared. They could have bought an island. Instead, they walked into the press conference and started talking about Krabbe disease.
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"It’s very emotional to know that there’s a reason for this," Sue told reporters back in 2008.
Because of that one press conference, Krabbe disease—a condition most people can't even pronounce—became the most searched topic on Google that day. The Rosenaus realized they had been handed a megaphone, and they weren't going to stop shouting until someone listened.
Turning Grief Into The Legacy of Angels
Krabbe disease is a monster. It destroys the protective coating of nerve cells, basically short-circuiting the body’s nervous system. For babies like Makayla, it's a death sentence that usually claims them before their second birthday.
The Rosenaus took $26.4 million—nearly half of their net winnings—and dumped it straight into a new nonprofit. They called it The Legacy of Angels Foundation (now known as the Rosenau Family Research Foundation).
They didn't just write a check and walk away.
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- Hands-on Research: Paul and Sue spent years traveling across the country, meeting with scientists and attending medical conferences.
- Targeted Funding: They committed over $10 million specifically to researchers like Dr. Maria Escolar, a leading expert in rare neurodevelopmental disorders.
- Newborn Screening: They fought (and won) in state legislatures to include Krabbe testing in routine newborn screenings.
Why does newborn screening matter? Because if you catch Krabbe at birth, an umbilical cord blood transplant can actually save the child’s life. If you wait for symptoms to show up, it’s often too late.
The Dark Side: Financial Betrayal and Personal Loss
You’d think after winning the lottery and dedicating their lives to charity, the universe would give them a break. It didn't.
Winning that much money makes you a target. The Rosenaus trusted a financial advisor to manage the foundation’s millions. It turned into a nightmare. They eventually had to sue after millions were mismanaged and funneled into high-commission variable annuities.
They eventually won an arbitration judgment of $7.3 million against Principal Financial Group, but the stress was immense.
Then came the hardest blow.
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Sue Rosenau, the woman who vowed to fight for a cure "until the day I die," was diagnosed with stage 3 ovarian and stage 4 uterine cancer. She fought those with the same grit she used to fight Krabbe. Sadly, Sue passed away in 2018.
Why the Rosenau Story Still Matters in 2026
Paul Rosenau still serves as the foundation’s president, though he’s stepped back from the daily grind. The foundation is now moving into a new era, led by experts like Dr. Cohn and the Rosenaus' daughters, Heather and Stacy.
To date, they have awarded more than $22 million to researchers.
Krabbe disease isn't cured yet. It's still a terrifying diagnosis. But because of a lucky ticket bought on a sad anniversary, children are living longer. They are getting screened at birth in states like Minnesota, Missouri, and Pennsylvania.
They turned a "Powerball curse" into a literal lifeline.
Moving Forward: Actionable Steps for Rare Disease Awareness
If the Rosenau story moves you, don't just close the tab. Here is how you can actually make an impact based on their work:
- Check Your State’s Screening Laws: Not every state screens for Krabbe disease. Visit KrabbeConnect to see what your state covers and how to advocate for expansion.
- Support Rare Disease Research: Small foundations like the Rosenau Family Research Foundation often fund "seed" research that big government grants won't touch.
- The "Five-Year Rule": If you’re ever in a position to give, look at the causes that have touched your family personally. That’s where the most effective philanthropy happens.
The Rosenaus didn't just win the lottery. They won a battle against obscurity for every family dealing with a rare disease.