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Barclays Center Invites Sufferers of Little-Known Disease to Free Event

By Leslie Albrecht | September 19, 2013 8:49am
 The Barclays Center is hosting a free seminar for people who has spondylitis, a painful disease, on Saturday, Sept. 21, 2013.
The Barclays Center is hosting a free seminar for people who has spondylitis, a painful disease, on Saturday, Sept. 21, 2013.
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PROSPECT HEIGHTS — The Barclays Center will make sports history with Brooklyn's first-ever major league ice hockey game this Saturday, but for a small group of people there's another event on the arena's schedule that day that's much more meaningful.

The Barclays Center is hosting a free seminar for people afflicted with an obscure disease called spondylitis, a debilitating, incurable condition that can cause chronic severe pain throughout the body.

On Saturday, spondylitis patients will get a chance to speak with Dr. John D. Reveille, a Houston-based physician who's the leading expert on the disease, and exchange information with fellow sufferers, said Laurie Savage, CEO of Spondylitis Association of America.

She said people with spondylitis often don't know anyone else with the disease until they attend one of SAA's seminars. "It's a wonderful opportunity to share experiences with people who suffer from the same disease," Savage said. "It’s quite touching to see people making friends."

The seminar ended up at the Barclays Center because developer and majority owner Bruce Ratner, executive chairman of Forest City Ratner Companies, has a relative with spondylitis, and wanted to help spread the word about the condition, which some people suffer from for years before being diagnosed, he told DNAinfo New York.

That's what happened to Ratner's family member, whom he asked not to identify. A woman in her 50s, she spent years visiting doctors who were mystified by her symptoms. One hurdle to getting help was that few doctors, even in New York, were knowledgeable about the disease, Ratner said. It wasn't until Ratner's relative trekked to Houston and saw Reveille that she was able to get a diagnosis and treatment.

"It’s a disease that's more common than multiple sclerosis, and yet it’s something that hasn’t gotten the kind of attention that other diseases get," Ratner said. "If we reach 300 or 500 people [with this event], we've done a great thing."

An estimated 84,000 people in New York and 25,000 in Brooklyn have spondylitis, but many may be unaware that they have the disease, Ratner said. The disease can strike people in their teens, and at its most severe can lead to the fusing of spinal vertebrae, giving the patient a permanently stooped posture.

"This disease strikes people in their late teens and early 20s, when they believe they're 10 feet tall and bulletproof," Savage said. "It's such a shock to learn you have a chronic condition at that age."

Ratner said the spondylitis seminar is in line with the Barclays Center's mission to host a range of community-oriented events alongside world-class entertainment such as Jay-Z, Justin Bieber, Barbra Streisand and Bob Dylan.

"We do a lot of things which focus on particular segments of the community that aren’t money making or profitable," Ratner said. They include events such as a concert by violinist Itzhak Perlman and cantor Yitzchak Meir Helfgot and a Caribbean music festival timed to coincide with the annual West Indian-American Day parade, Ratner said.

However, the arena has yet to host any of the 10 "community events" intended to raise money for local nonprofits. The Barclays Center agreed to host the events under the Atlantic Yards Community Benefits Agreement, which spelled out how locals would benefit from the arena.

Ratner said the arena set aside 10 dates for community events, but has yet to receive requests to use them. That could be because putting on an event in an 18,000-seat arena is a daunting task, he said.

"Community groups are welcome to exercise their rights to use it," Ratner said. "The 10 days are available and we haven’t gotten the requests. It's not because I think they don't want to, it's just a lot for small groups to put together [an event] to fill half or all of an area."

Another community program has been more successful, Ratner said.

The arena gives out 50 free tickets to every event to local groups and schools. The tickets are distributed through a lottery system, and they're available to any Brooklyn-based community organization. Some tickets will be given out at a Sept. 19 event hosted by the Downtown Brooklyn Neighborhood Alliance.

"What's good about it is, had we given away tickets to this or that community group, we would have gotten complaints [of favoritism]," Ratner said. "By having a lottery system, it's really a very fair way of doing it."