Community Corner

New London Resident Taking Strides To Conquer Chiari

Patricia Santiago is an organizer in the sixth annual walk to raise funds for research and awareness of Chiari malformation

A New London resident is taking a key role in an upcoming event to benefit those who suffer from a rare neurological disorder.

Patricia Santiago, a substitute secretary and aide in New London Public Schools, is one of the organizers of the Conquer Chiari Walk Across America event on Sept. 21.

Santiago first got involved in the benefits after she was diagnosed with the disorder, known as Chiari malformation. The disorder involves an extension of brain tissue into the spinal canal, leading to neck pain, headaches, balance problems, and weakness or tingling in the arms and legs.

Find out what's happening in New Londonwith free, real-time updates from Patch.

“There’s no cure,” said Santiago. “There’s no real medicine except to treat the symptoms, and the only thing that some people have found relief in is getting a brain surgery done. But that fails about 20 percent of the time.”

After having her third son in 2000, Santiago started passing out and having severe headaches. Doctors initially attributed the symptoms to stress, though she was later found to have Chiari malformation. She had brain surgery in 2010, but most of the symptoms returned a year later.

Find out what's happening in New Londonwith free, real-time updates from Patch.

“I used to be able to work a lot more. I’m on disability. I can’t walk more than a mile without my leg going weak. I can’t drive,” said Santiago. “It’s been very difficult on me, on my husband, on my kids. But they’re very supportive and they help out all the time.”

The walks, which take place on the same day across the United States, raise money toward research as well as education and awareness programs. This is the sixth year the Conquer Chiari walk has taken place, and Santiago has attended each one. Last year, she began volunteering as an organizer.

“This year I’m really trying to get out there and spread more awareness and try to find sponsors,” she said.

The event typically has a number of fundraisers leading up to it, with businesses and individuals donating prizes and services. Last year, it raised about $535,000 nationwide.

“We try to make it not too long, but long enough that people can talk to each other and learn more about it together,” said Santiago.

Registration for the walk begins at 2 p.m. on Sept. 21 at Westbrook High School, and the walk starts at 3 p.m. People who register by Friday with a minimum donation of $25 will receive a T-shirt. There is no set distance and walkers may complete laps at their own fitness level.

For more information, contact Santiago at 860-961-4924 or psantiago614@gmail.com or visit conquerchiari.org.

Follow us on Facebook and Twitter.


Get more local news delivered straight to your inbox. Sign up for free Patch newsletters and alerts.

We’ve removed the ability to reply as we work to make improvements. Learn more here