The poet Emily Dickinson called hope “the thing with feathers that perches on the soul,” and Leopoldo Fernández Pujals and his wife, Marilina, know all about “the thing” with feathers. Their son Andres was diagnosed with Alpha-1 as an infant and underwent a liver transplant before the age of two. He’s now an active eight-year-old, but the genetic disorder still casts its shadow over the family.
“What I want to find is a cure—to eliminate this genetic problem from the map,” says Marilina Fernández. “This is my hope—when my son is married, his children will not have this disease.”
To give their hope flight, the Fernándezes have donated $3 million to the Alpha-1 Foundation to date through their Madrid-based charitable foundation. Their giving launched the Fernández Liver Research Initiative, aimed at stimulating research in an area many scientists believe will provide the key to unlock a cure for Alpha-1. They were also instrumental in establishing the Alpha-1 DNA and Tissue Bank in 2001, part of the Alpha-1 Research Program at the University of Florida in Gainesville, and in advancing screening and detection efforts.
Newsprint and an Inhaler
According to Fernández, two “amazing coincidences” led her and her husband to the Alpha-1 Foundation. The first involved an inhaler; the second, a faded newspaper clipping.
The inhaler belonged to John Walsh, president and CEO of the Foundation. While attending a wedding, Walsh met up with an old friend whom he hadn’t seen in 20 years. Why, the friend asked, was John having difficulty breathing and using a bronchodilator? As Walsh explained his battle with Alpha-1 and founding the Foundation, his friend recognized the disorder immediately. “My nephew has just been diagnosed with the same disease,” he said. His nephew was Andres Fernández.
And the newspaper clipping? Marilina Fernández cut it out in 1996—part of her habit to read and save everything she could about her son’s disorder. It told the inspirational story of Alpha Karen Fraser, wife of former University of Miami baseball coach Ron Fraser. “I kept that article, waiting some day to meet her and talk with her,” says Fernández. She eventually did, through a mutual friend. Fraser explained the Alpha-1 Foundation’s ongoing screening, detection, and research efforts. “I still had that newspaper article after all those years,” says Fernández. The two women now serve together on the Foundation’s Board of Directors.
“All of us on the Alpha-1 Foundation Board of Directors have the same vision,” she says, “We are going to find a cure. Of that I am sure.”
Pursuing a Vision
Her husband, Leopoldo, has already proved himself a man of vision. The Cuban-born Fernández went into exile arriving in the U.S. as a 13-year-old. After graduating from Stetson University, he attended Officer Candidate School at Fort Belvoir, Va., served in Vietnam, began a management career, and worked with Johnson & Johnson in New York, Boston, Guatemala, Panama, and eventually ended up in Spain. But he wasn’t content to merely climb the corporate ladder.
On a visit to the States, Fernández couldn’t help but notice Domino’s fast, efficient pizza-delivery operation. He thought, why couldn’t a similar business work in Europe? Leaving Johnson & Johnson to pursue his entrepreneurial vision, he launched TelePizza in Spain in 1988. The new venture was a success right from the start. Soon TelePizza expanded to eight European countries and ranked as the fastest-growing company on the continent. In 1996, the business went public on Spain’s stock exchange, and in three years its value topped $1.9 billion.
Leopoldo and Marilina met and married in her native Spain while TelePizza was expanding, and they grew the business and a family together. Now, they apply the same energy and imagination to the challenge of Alpha-1. They have unshakable confidence in the research efforts funded by the Foundation.
“At the Alpha-1 Foundation, we know our resources are going where they do the most good,” says Marilina Fernández. “Many people are committed to a cure. We are going to find it.”
The tone and hope in her voice leave no room for doubt. In fact, listening to her, you can almost hear the thing with feathers rustle its wings, about to take off.
Article first published in Alpha-1 Magazine in Spring 2003