By Janene Holzberg
10:18 AM EST, November 19, 2013
Just as Sean Hull’s career and personal goals were jelling, his mother was suddenly hospitalized. Two days later, she was gone.
An insidious disease called sarcoidosis -- which is still being studied after decades of research -- took Hull’s mother’s life, and the Ellicott City resident still has questions about what causes the mysterious illness.
In her memory, Hull established the Life and Breath Foundation in 1998, just two years after her passing. He was 31 at the time.
Ida E. Hull was only 59 when she lost her fight against an illness that no one, including her, knew she had. Though she had silently struggled for 13 years with the inflammatory disease, which causes lesions called granulomas to form on internal organs, family members only learned what had killed her from an autopsy.
“We now know that she had scars in her lungs -- which affect the majority of people -- but they can also form in the eyes, the brain or the heart” and other organs, Sean Hull says.
“My mother never really shared anything [about her symptoms] with the family,” says Hull, a relationship manager in the wealth management department at PNC and the youngest of three siblings who grew up in Upper Marlboro in Prince George’s County. “It was her way of protecting us.”
He established the foundation to help support, guide and inform individuals who suffer from the disease, and to fund clinical research. More than $300,000 has been raised over the years, and those funds have been donated to Johns Hopkins University in Baltimore to support ongoing research.
Hull writes on the foundation’s website that his mother had been encouraging him in the years after college to believe he would attain great success in his career and in officiating ACC basketball games, both of which came to pass not long before her death.
He had graduated with a degree in accounting from Salisbury University, where he had played soccer and basketball and developed a love for officiating.
“I like to say that my mom had a high school education, but a Ph.D. in common sense,” he says.
“All that she taught me, all that she instilled in my brother and sister as well as in her grandchildren, still resonates and drives us to be the people we are all these years later,” says the married father of four, now in his mid-40s. His children range in age from 7 to 23, and he has one grandson.
But there’s a lot yet to be done to find a cure for the illness.
“Sarcoidosis is a disease that causes inflammation most often in either the lungs or lymph nodes but can involve any part of the body,” explains Dr. David Moller, professor of medicine and director of Hopkins’ Sarcoidosis Clinic and Research Program.
“Sean is a dedicated person and the driving force behind [his] foundation’s efforts to raise public awareness and support research on this disease,” Moller says.
The best estimate in the United States today is that sarcoidosis affects 10 Caucasians and 40 African-Americans out of every 100,000 people, according to Moller.
Hull says that managing the illness is often very frustrating to the patient and to the patient’s family.
Symptoms can include joint pain, rashes and dizziness, and can mimic autoimmune diseases in which the body’s immune system attacks healthy tissue.
“People look OK, but they don’t feel OK,” he says. “And we have discovered in the last two years that more patients need help dealing with everyday life.”
Hull has been working to create a bigger fundraising presence, and the foundation’s annual Flip Flop Festivus has been successful in achieving that since it was started in 2009.
“It’s a casual event that brings the Caribbean to the Inner Harbor, but it’s also billed as a big football party and takes its name from the Festivus held in 2000,” he says. That was when the Ravens first used the nickname to describe the December playoffs leading up to their Super Bowl XXXV win in 2001. Ravens and Orioles players, past and present, attend the fundraiser.
Jack Kwicien, a managing partner at Daymark Advisors and the Life and Breath Foundation’s planning chairman, calls Hull’s dedication and commitment “a true act of love.”
“His vision and drive have inspired others to become involved and to make a commitment of their time, energy and money for a great cause,” Kwicien says.
Hull has set a goal of reaching the $2 million mark in fundraising within the next five years, which he says will be enough to start clinical trials.
Determination is one of his strongest qualities, he says, instilled early on in life by his father, Rodney Hull, a retired Army lieutenant colonel who is 76 and lives in Atlanta.
“I recognize that we’re getting closer [to our goal], and I’m determined to get there,” Hull says. “I’ve got my fingers crossed.”
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