By Mary Gail Hare, The Baltimore Sun
3:35 PM EDT, September 16, 2012
His mother's death 16 years ago came as a sudden shock to Sean Hull. Even more distressing was the family's discovery that Ida Hull had suffered in silence for years with sarcoidosis, a debilitating, often fatal disease that frequently attacks the lungs.
"I made up my mind that I would do something for her and in her memory," said Hull, 47, a banker and NCAA college basketball official. "I am working in her spirit to fight this disease."
Proceeds from the fourth annual Flip-Flop Festivus Saturday at the Four Seasons hotel in Harbor East will help continue research into what the medical community calls an under-recognized disease.
Hull established the Life and Breath Foundation to fund research into a cure and to raise awareness of sarcoidosis, a chronic, inflammatory illness about which far too little is known, he said.
"It is the disease that no one has heard of, but many die of," Hull said. "My mother struggled by herself. There are many others in that same boat. They look OK but are struggling with this disease. We want people to know our foundation is here and can help."
Sarcoidosis causes clumps of cells, called granulomas, to form in an organ and affect how it works. In the lungs, it can cause shortness of breath and a persistent dry cough. The disease has also been known to damage the spleen, brain, heart and nervous system. It is often difficult to diagnose and patients may experience symptoms for years without knowing they have the disease.
"Since inflammation can affect any part of the body, sarcoidosis presents itself in myriad ways," said Dr. David R. Moller, professor of medicine and director of the Sarcoidosis Clinic at Johns Hopkins Hospital. "This is an under-recognized disease that is a significant health problem. One study has shown it is a lifetime risk for more than 2 percent of the African-American population and for 1 percent of Caucasians."
Hull's efforts, which include annual golf tournaments and the "high-casual" gala, dubbed festivus, have brought the disease to the forefront and are also funding research, Moller said.
"It is great to see how these events have increased awareness and raised research funds," he said. "The philanthropy of Sean and a terrific group of family and co-workers is helping to bridge the gap in government funding. It means we can keep the research going."
After several successful golf tournaments, the foundation organized the gala that allowed guests to dress down. Hull wanted to recreate what he called the Caribbean experience in a downtown location.
"This is no black-tie affair," he said. "It's just nice to go to a great place in resort casual, down to your flip-flops."
Moller wore sneakers last year and felt out of place. He advises flip-flops and will attend this time in the featured and favored footwear, he said.
Hull's sports connections helped him lure past and present Ravens to the party, which starts with a VIP hour for a limited number of guests who want to mingle with the football players. The evening's main event, which includes multi-cultural cuisine, music and an auction, begins at 7:30 p.m.
The first festivus, a term borrowed from the 2000 Super Bowl team's Festivus Maximus, drew about 235 guests. Hull is hoping to more than double that number Saturday.
The foundation has raised about $300,000, much of it for Hopkins research, Hull said.
A grant from the National Heart, Lung and Blood Institute to the Sarcoidosis Clinic at Hopkins is helping to develop a blood test that will allow early detection. Diagnosis now involves a biopsy that comes at a high cost and some risk to the patient, Moller said.
"We are in this fight for the long run," Hull said. "Right now, we are just gaining momentum. I know there will be a cure in our lifetime. That's the dream."
Tickets are $100 and are available at the door or at lifeandbreath.org. VIP tickets are $175.
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