Son’s Rare, Often Deadly Brain Tumor Drove His Father to Build Better Medical Technology

Father, two kids, and the family dog stand on a hill looking up at a rainbow

For the Piper family, gazing skyward is a settling tradition. One day after son Noah’s chemotherapy at UVA’s children’s hospital, dog Riley, Noah, father Neal and twin sister Saphia step out onto their lawn to admire a rainbow. (Photos contributed by Neal Piper)

It was the news parents dread.

In August 2019, Neal Piper and his wife, Valeria McFarren Piper, noticed that their 3-year-old son’s voice sounded odd, almost like he had laryngitis. He was also choking on his food and saliva and experiencing head and ear pain.

An MRI brought the news: Noah had a mass at the base of his brain. “It was in that moment where the room felt like it was shrinking in on us and our understanding of place was difficult to comprehend,” Neal said.

The diagnosis: Noah had an exceptionally rare, cancer-like condition called Langerhans cell histiocytosis. Now the young family was on a frightening and unexpected new path.

Noah was placed in the pediatric intensive care unit at the UVA children’s hospital for about 10 days and sedated. For the first time in their young lives, he and his constant companion and twin, sister Saphia, were separated.

Noah walking with IV Pole

Three-year-old Noah with an IV pole in one hand and a Slinky in the other, attempts to walk and play at home while tethered to an outdated device that is the current standard of care for tube feeding.

“Noah was in a medical coma and intubated for a week due to his critical airway,” Neal said, explaining that everything Noah ate and drank was funneling to his lungs instead of his digestive system. “He developed pneumonia and was in critical condition, and each morning approximately 30 clinicians were discussing his care plan and how to keep him alive.”

Once stabilized, Noah would embark on a 15-month course of treatment at UVA’s Battle Building. It was five days a week, with the daily treatments lasting between six and eight hours. On top of that, the 3-year-old, unable to swallow food, was tethered to an outdated medical device 24 hours a day to get nutrition.

Dealing with that device proved to be one of the biggest challenges of Noah’s care. He had a tube inserted in his stomach to deliver the nutrition he was unable to swallow.

“Noah came home with an archaic device that requires you to have an IV pole,” Neal Piper said, noting that the system is gravity-fed. “There’s a lot of alarms and no data tracking. When undergoing care and when at home, Noah was required to sit up to 24 hours a day, attached to long tubing.

“No one wants their kid to be sitting in front of the television all day. That was our only option to keep him still at that age.”

Group of nurses on Noah's last day of treatment
This photo was taken the last day of Noah’s treatment. He is sits on his father Neal’s lap, far right. To his left are his twin Saphia and mother, Valeria McFarren Piper.

Piper and his wife were working full-time jobs, and nurses and caregivers came to the family home to help. The lack of sophisticated data tracking of Noah’s feeds was particularly vexing. With an oncology patient who is immunocompromised, the family and caregivers had to keep handwritten logs of his nutritional intake, Piper said. “We were concerned with him having failure to thrive and not getting the nutrition he needed.”

That’s when Neal Piper decided to form a new company, dubbed “Luminoah,” to search for a way to revolutionize tube feeding, also known as enteral nutrition. He founded it in March 2020, just as the pandemic settled in.

Space and Rocket Ships

Piper thought of the name for the company during one of Noah’s many, lengthy treatments in UVA’s Battle Building. A big picture of a rocket ship hung in one of the building’s spaces, and father and son would talk about outer space and rockets, which fascinated the 3-year-old. “So, we merged lumination, the measure of light, with Noah’s name to create a brighter future for millions of patients around the world that require this type of therapy,” Piper said.

For most of his professional life, Noah’s father has worked to advance health care. He’s worked in about 18 countries representing Pfizer Pharmaceuticals and Population Service International and has commercialized pharmaceutical products and medical devices globally.

Piper and his wife personally invested in the company, hired a clutch of biomedical engineers to start working on a redesign, interviewed caregivers about the state of tube feeding and people with other diseases who require the treatment.

“There are over 300 disease states that require enteral nutrition,” Piper said. “So, we really wanted to get a diverse viewpoint.”

Then he turned his attention to fundraising.

“In 2021, we raised approximately $1 million in a seed round,” Piper said. “We received several hundred thousand dollars worth of grants from different pediatric accelerators.”

In June, Luminoah closed a $6 million funding round with participation from five institutional investors. One that helped Piper’s company reach that milestone figure is a group of University of Virginia alumni, staff, faculty, parents and friends known collectively as CAV Angels.

UVA Investors Push Luminoah Past $6 Million Mark

CAV Angels is a non-University-affiliated group of investors dedicated to “elevating the entrepreneurial ecosystem for UVA alumni by educating, connecting, funding, and mentoring the extended UVA startup community.”

“If you look at our board, all of our members have a UVA connection, and all of the investments have a UVA connection. So, it’s really to support the entrepreneurial ecosystem of and around UVA,” said CAV Angels co-chair Rich Diemer, a 1980 graduate of the McIntire School of Commerce.

Piper pitched Luminoah to the nonprofit group and 24 members of CAV Angels collectively invested $527,000. Just as Luminoah passed the $6 million-mark, CAV Angels’ investment into Piper’s start-up pushed the group past a total of $20 million in investments in early-stage companies.

CAV Angels was founded in 2015 and has gained steam in the last four years. To this point, it has invested in 45 companies.

“We have over 500 total members. We have 141 accredited investors – so full members – and over 300 student members,” Diemer said. “And we have a growing group – actually the fastest-growing now is the educational members, some who meet the Security and Exchange Commission’s definition of accredited investor and all who aspire to be future angel investors.”

Educational members are UVA alumni that CAV Angels educates on how to successfully invest in entrepreneurial enterprises.

Diemer said people should invest with CAV Angels for a simple reason: “That’s really the only direct way you’ll get access to what is a relatively undiscovered market for startups and technologies,” he said. He said it’s a different way to give back to the UVA community. “It’s really access into the alumni that are doing great innovative things and we’re waiting to hear about them and to bring them to our members.”

Noah in garden

Like many people, the Piper family planted a garden during the pandemic. Noah tends it daily and harvests crops like tomatoes.

For more than nine years, Piper was the chief executive officer and president of the UVA-affiliated non-profit group, the Presidential Precinct, founded by former UVA rector James Murray. Piper’s enterprise was clearly attractive and he has big goals for Luminoah in 2024.

“We’ve got a working device and system and platforms,” he said. “We’re close to a design freeze, and we’ll take that product and submit [it] to the FDA and anticipate approval in the third or fourth quarter of next year.”

Noah is Almost 7

After 15 grueling months of chemotherapy, Noah became one of the millions of patients in the United States who ring a bell at a hospital to signal their treatment has ended. For Noah, that day was Dec. 4, 2020.

In the early days of his illness, when Noah was in the pediatric ICU, the family brought a tradition from their home in Albemarle County to the hospital.

It involves the sky.

“Our home looks east,” Neal Piper explained. “And each morning Saphi and Noah would wake up and see the sun coming up and say, ‘Sunny days ahead!’

“So, when we were in the hospital, we looked east. We’d see the sun rising. Hot air balloons would come up, and we realized that we had hope,” he said. “We had hope for a positive outcome. We had prayer from around the world. Even the Pope himself blessed a medallion through a friend and sent it our way.

The Hardest Working Icon: The Rotunda Enriches Student Life Daily
The Hardest Working Icon: The Rotunda Enriches Student Life Daily

“And our clinical team was incredible at UVA,” Piper stressed.

Things are looking sunny for the Piper family. Noah got a clean bill of health after his most recent scan and the family is looking ahead to a celebration.

This July, Noah and Saphia will be 7 years old. They want to spend their birthday at the pool with friends. Saphia would like to have a panda-themed cake. Noah wants a cat cake.

“They both love animals and nature,” their father said.

Media Contact

Jane Kelly

University News Senior Associate Office of University Communications