Feb. 18—With a ceremonial flip of a handle Thursday night, the new home of the Children's Mercy Research Institute will light up in a blaze of LED illumination that sets it apart from every other building on Kansas City's Hospital Hill — or, perhaps, the world.

The lights on the nine-story building, curved to call to mind a DNA helix spire, are a declaration.

"We proclaim to the city that we're working on the diseases that children bring to us," said Tom Curran, the research institute's executive director and chief scientific officer.

"But the second role is that every investigator in the building is bathed in light that filters through the DNA code of our patients, so they're in a sense reinforced that every day they come to work, they know exactly who they are working for."

And these aren't just any DNA strands.

The public will get its first official look inside the $200 million project at 7 p.m. Thursday during an opening celebration designed for these COVID-19 days of social distancing: It will be virtual.

Children's Mercy patients and supporters of the hospital — including some hosts of the annual Big Slick Celebrity Weekend fundraiser — will make appearances during the virtual ceremonies. Registration for the event is on the institute's website, childrensmercy.org.

The big moment belongs to former Children's Mercy patient Ben Soden, who will "light up" the building, revealing the DNA patterns of four patients diagnosed with rare diseases emblazoned on the glass facade. One of them is his.

The lights are turned off during the day, but even then there is still a pattern that hints at something unique going on here.

The public is invited

The building was designed not only for the medical minds working there, researchers whose work will affect the health of sick children around the world, but for Kansas City, too, say the people who spent years planning it.

"We don't believe in the separate, 'ivory tower on the hill' mentality. We are part of the community," said Curran. "The building has areas that are designed to engage the community."

Think: Watching a concert or dance performances inside a pediatric research facility.

The former deputy scientific director of Children's Hospital of Philadelphia who brought a distinguished resume in academia and industry when Children's Mercy hired him in 2016, was impressed by Kansas City's arts community when he arrived.

As a fan of the arts himself — he is on the board of directors for the Kansas City Ballet — he asked architects to design an auditorium that could be used for public events.

"We have great music in the city. And we have patients and families that spend a very long time in the hospital and may not have access to this rich world of arts," he said. "By providing an environment where we can host visits of artists in various ways, we open up both to our patient population and to the community.

"We would love to have community events where we bring people in. We tell them, what's the science going on in this building? How is this helping children? And by the way, let's celebrate life. Let's show an orchestra rendition of a fantastic piece of music. Let's have a dance interpretation."

In 2018, the Hall Family Foundation and the Sunderland Foundation each donated $75 million to launch construction of the 375,000-square-foot building and recruit researchers from around the world. That combined $150 million is the largest one-time gift made to a children's hospital for pediatric research, according to Children's Mercy.

One of the institute's flagship research projects is Genomic Answers for Kids, a first-of-its-kind pediatric data repository that is gathering genomic data from 30,000 children and their families over the next seven years. The data will be shared with scientists worldwide.

Researchers describe genomes as "the information repository of an organism." So far, more than 2,230 families and more than 2,600 patients have enrolled in the program, leading to the development of 10,200 new genome sequences, said Curran, who called that "an enormous amount of information."

"That's actually a pretty big impact from a very new project, running less than a year in the time of COVID, which presented many challenges and indeed slowed down recruitment into the program," said Curran.

Illuminating DNA

The building was designed to tell the story about what goes on inside.

"The backdrop here is really a science story. In science, you design experiments, you test hypotheses, you may have an expected outcome. But you always have to be ready for the unexpected," said Curran. "So that's kind of what's happened here."

Architects with Overland Park firm BSA LifeStructures designed a glass facade to let natural light pour in. They initially created a "very attractive" abstract pattern of light and dark glass panels for the exterior, said Curran.

He thought they looked like Sanger sequencing, a method of running DNA sequences developed by British biochemist Frederick Sanger. So he asked architect Jackie Foy if it was possible to arrange the panels that way, he said.

Then he asked two genomics experts at Children's Mercy if they had any DNA sequences from patients with rare diseases that could be replicated on the outside of the building.

They chose four patterns, all of which were tweaked for "an additional layer of security" for the patients' privacy before they were recreated in lights, Curran said, though most have already been published in scientific journals.

Soden agreed to serve as a sort of "poster child" for the building, Curran said, giving the hospital permission to reveal that one of those sequences represents the health condition Children's Mercy treated him for when he was a high school wrestler. Soden is now 20, a student at Loyola University in Chicago who plans on attending law school, according to the hospital.

Fit and healthy, "he developed pretty worrying symptoms in terms of his heart rate, and he was brought in for testing and it was discovered he had a rare genetic variant that affected his ADHD medicine," Curran said.

"So in a sense he was being way overdosed because he had a gene variant that blocked metabolism of the drug. So the solution in his case was pretty straightforward, simply reducing the dose of the drug."

At night, lit with LED lights behind them, the panels will glow white and red, the red symbolizing DNA mutations. The pattern on the front of the building is mirrored on the back.

The other aesthetic in the building, Curran said, "and this is something that's fairly unique to us, is the underlying reality that science, mathematics by themselves are intrinsically aesthetic," he said.

"So you look at ... the building, if you knew nothing about DNA, it still captures your attention and draws you in, and those rare red panels immediately pose a question: 'Why is that panel a different color?'

"And that's actually reflected inside the building. There are many designs where we've used ... patterns, or representations of DNA or molecules on the floors, on the walls, so that wherever you look there's something that triggers an idea that hey, that's not just a nice pattern, that's underlying reality."

During the day when the lights are off a subtle pattern still shows through.

Then, at night, in the dark, with the lights on, Curran said, "the veil of subtlety is lifted."


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