When Sean Hull’s mother died in 1996, he had no idea that she had been ill.
“After the autopsy, we found out that she had been suffering for 13 years, unbeknownst to the family,” he said.
Hull's mother, Ida E. Hull, had sarcoidosis, an autoimmune disease that leads to inflammation in different parts of the body.
Two years after his mother's death, Hull, an Ellicott City resident, founded the Life and Breath Foundation, an organization dedicated to raising awareness about this often-misdiagnosed disease and, ultimately, finding a cure.
To that end, the foundation is hosting its fourth annual Flip Flop Festivus, a fundraising celebration that brings Baltimore Ravens players and fans together for a night of entertainment, food, drinks, prizes and, most importantly, awareness about sarcoidosis.
“We did not know that she had the disease at all,” Hull said, and he doesn’t think his family was unique.
“There are a lot of patients, families, even primary care physicians that are not as familiar with this disease because it’s not something that is on the a-list.”
According to the director of the sarcoidosis clinic at Johns Hopkins University School of Medicine, the disease is so mis- or under-diagnosed that “we can only guess at how many people are affected.”
In a fact sheet released by director David R. Moller, he states that the “best estimate” is that about 10 in 100,000 white people and 40 in 100,000 black people have sarcoidosis.
Research looks promising, Moller wrote, and his clinic is close to developing a blood test to replace the invasive biopsies that patients currently have to go through for a diagnosis.
To complete the research, however, the clinic needs funding. That’s where Hull comes in. When he started the foundation, Hull focused his fundraising efforts into a golf tournament.
“We used that first 10 years to really get an understanding of how to fundraise,” Hull said. “Establishing our identity, our mission in the community.”
In 2008, Hull decided to put on a different kind of event to counteract the negativity he was feeling because of the economy.
“Why not create an event that could put a smile on everyone’s face?” he asked.
Hull said he thought about the things that made people happy: Caribbean vacations, sundresses, feet in the sand …
“My thought was to bring that to the Inner Harbor. Something festive,” he said.
It just so happened, one of his committee members told Hull, that in Baltimore, “Festivus” is synonymous with the Ravens winning the Super Bowl. So Hull invited Ravens players past and present to join the effort.
Flip Flop Festivus was born.
This year, the VIP reception give donors and Ravens players—including Qadry Ismail, Brad Jackson and Matt Stover—a chance to mingle while dining on multi-national cuisine courtesy of Michael Marx of Miguel's Cocina & Cantina.
The general reception will feature food and drink, the soul revue band Mo’ Soul, raffles and auctions.
The goal, Hull said, is to raise $50,000 at this event and, soon, $1 million.
“That’s what Hopkins has said would put them in a position to fully develop this blood test and recognize patients who have sarcoidosis.”
And in his lifetime, Hull said, he hopes to see a cure for the disease that ultimately killed his mother.
“My mother gave me everything in my life,” Hull said in a statement about the fundraiser. “Opportunity, support and guidance were the things I was able to take from her, and the things I continue to pass on to others today.
“Everything I became or aspire to become will be because of Ida E. Hull.”
The Flip Flop Festivus takes place at 7:30 p.m. on Saturday, Sept. 22, at the Four Seasons Hotel in Baltimore City. Find more more information about the Life and Breath Foundation and the Flip Flop Festivus, including registration information, online.