Turning the Compass Toward a Cure
Florida benefactors take road less traveled in approach to life, finding cures.By Mayo Clinic Staff
As the door opens into Lou and Laurie Appignani's home, Miami seems a world away. Most striking is a precisely arranged collection of ceremonial masks from their visits to Papua New Guinea in the southwestern Pacific Ocean. Each mask has its own story — stories that Lou happily shares.
By stepping into the unfamiliar, the Appignanis have come to appreciate the best elements of humanity. With nostalgic undertones, Laurie says, "We feel like vagabonds of the planet. There is so much to explore, so little time."
Lou and Laurie have spent a lifetime following their compass across the map. Laurie continues, "It's those moments in faraway places — a small gesture from a stranger who offers to share the little they have — it speaks volumes to me."
"We've been fortunate to have the opportunity to travel." She looks at Lou with a warm smile. "By immersing ourselves in different cultures, embracing a world of unique identities, we've learned how each of us can take steps to make this a better place, before we depart it."
The couple's favorite thumbtacks on the map are pressed on paths less traveled — Outer Mongolia, the Great Rift Valley of Ethiopia, Namibia, Libya and Antarctica, to name a few. But these destinations represent more than just another pinhole. The couple's global experiences drive their humanitarian efforts.
"A life of travel helps you see things in new ways. It's given us a sense of belonging. When it comes down to it, we're all members of the same tribe," Lou says.
Their Next Destination
Along with their appreciation for culture and history, the Appignanis are science-minded individuals with a penchant for discovery and critical thinking. In the city they call home, Lou and Laurie established a University of Miami endowment for the study of atheism, humanism and secular ethics — the first of its kind in the country. The philosophy is considered contrarian by many, but that's how Lou likes it.
"With travel and in life, I stay open-minded to new things and then navigate my own way through it all," he says. "Even from the time when I was very young, I never felt like I was in my own skin by simply doing whatever was expected of me. I was compelled to do more."
Laurie cracks a smile, "Because you're always trying to prove something to yourself."
As the couple recalls some fond memories, Lou says, "You could drop me off anywhere in the world. Just give me a few dollars in my pocket, and I'll follow my compass back home as a better man."
So, when Lou had serious health concerns, he trusted his compass and followed it to Mayo Clinic.
Mayo Clinic confirmed Lou's diagnosis. It was an inflammatory and immune-mediated skin disease called lichen planus. In diseases like this, the immune system is triggered to attack parts of the body that otherwise it should defend.
Lichen planus uproots the quality of life of many, but is rarely discussed. The disease can affect the skin, hair, nails and mucous membranes. On the skin, lichen planus usually appears as purplish, often itchy, flat-topped bumps. In the mouth and other areas covered by a mucous membrane, it forms lacy white patches with painful sores.
There's also a secondary risk of squamous cell carcinoma, but little is known about how that might be linked to cancer malignancy in the long term. Lou's care team of specialists agreed that a conventional, cautious strategy was the best path to take.
Like many others, Lou struggles with his symptoms. He says it's almost a perpetual feeling of discomfort, which even interrupts his only sanctuary away from it — sleeping. But Lou pushes on because he doesn't want to be limited by a life with borders.
"I don't want this disease to define me, and I don't want it to rob anyone else of the life they choose to pursue," Lou says. "Maybe if we can make a difference in one person, we can use that knowledge to help many."
Quickening the Pace
Although lichen planus is common, there's no cure and relatively little active research being done on it anywhere in the world, which is exactly the kind of mountain Lou likes to climb.
When Lou and Laurie decided to make a gift to medical research at Mayo Clinic, they wove together the things most important to them. With empathy, and some adventurous spirit mixed in for good measure, they set out to relieve suffering in others. That's part of what makes their gift to Mayo so special. It wasn't to quicken the pace toward a cure for Lou but to help draw the map to a cure for others.
When benefactors express interest in making a gift with personal significance, the Department of Development works to find opportunities that are most exciting to them. Lou says, "In its own small way, we hope this gift will train tomorrow's leaders. Maybe it will even help a promising dermatologist with long-range research ambitions."
The Appignanis' endowment will certainly improve Mayo's ability to study this enigmatic disorder. Mayo Clinic's Department of Dermatology and Center for Individualized Medicine will collaborate to advance a creative dermatologic research approach. Mayo Clinic honors the Appignanis as Principal Benefactors.
Guided by Lou and Laurie's generosity, Mayo experts will use sophisticated genomic technologies to define relationships between an individual's lichen planus and their unique genome — then use what they learn to find the right treatment for each individual. Researchers hope to make discoveries beyond lichen planus alone and unravel the mysteries behind other skin conditions.
Perhaps Lou's mark on humanity will stem from adversity.
"I hope this gift helps others see things in new ways, tap into a pool of knowledge not widely known. These are things I also hope personify who I am."
When asked to share more about the legacy they'll leave behind, Lou says with a smile, "We are all equal members of planet Earth. I simply want to be known as someone who followed a moral compass across it."
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