Gilberts give $375M to recover from strokes, fight genetic condition that affected son
Detroit ― Billionaires Dan and Jennifer Gilbert on Wednesday unveiled an estimated $434 million effort with Henry Ford Health to help people recover from strokes in Detroit while establishing a research facility that will work toward finding a cure and treating a genetic condition from which their late son suffered.
The Gilbert Family Foundation is helping to establish a 72-bed physical medicine and rehabilitation facility in Detroit with partners Henry Ford Health System and Shirley Ryan AbilityLab. The foundation, a private fund created by Dan and Jennifer Gilbert, also announced it is creating the Nick Gilbert Neurofibromatosis Research Institute in Detroit, which will work in partnership with Henry Ford Health and Michigan State University Health Sciences.
The announcement came four months after the Gilberts' eldest son, Nick Gilbert, died in May from neurofibromatosis, a condition that causes non-cancerous tumors to grow along nerves in the skin, brain and other parts of the body. He was 26.
"Detroit will become a leader" in stroke and other neurorehabilitation issues because of the initiatives, Jennifer Gilbert said during a Wednesday press conference with her husband at Book Tower Detroit.
"Today, we double down on our commitment and honor Nick's passion for a future without neurofibromatosis," Jennifer said.
The rehabilitation facility initiative is expected to cost $179 million, while the research institute has a total price tag of about $240 million over 10 years, plus another $5 million to cover any possible cost overruns, according to the Gilbert Family Foundation. A $10 million stroke and spinal injury fund will help provide funding care for low-income Detroit residents.
The new 72-bed rehab facility will be managed by Shirley Ryan AbilityLab, a Chicago-based firm that specializes in such care and will occupy three floors of the new Henry Ford Hospital patient tower, totaling 125,000 square feet. The new hospital is expected to begin construction next year and be completed in 2029, Henry Ford Health officials said earlier this year.
The rehab facility will provide inpatient care for those recovering from strokes, traumatic brain injuries, spinal cord injuries and other conditions. Michigan had 5,781 stroke deaths in 2021 and was tied for 12th highest nationally with Tennessee for its stroke death rate of 46.2 fatalities per 100,000 population, according to the Centers for Disease Control and Prevention.
The Gilbert Family Foundation will contribute nearly $375 million in grant funding, while Henry Ford is financing the remaining $60 million specifically for the Shirley Ryan AbilityLab.
The Nick Gilbert Neurofibromatosis Research Institute ― which will cost $50 million, funded entirely by the foundation, and is expected to open in 2027 ― will collaborate with research institutions and researchers from around the world in a bid to create novel disease models using organoid technology and other methodologies to fight Type 1 neurofibromatosis, also known as NF1. It won't provide care for the disease.
These organoids, or "mini organs in a dish," allow researchers to rapidly test potential drug treatments to see the impacts of treatment on healthy and unhealthy tissue.
The organoids are essentially complex three-dimensional cell cultures that could be less expensive and time-consuming than animal models when used to study conditions like NF1, said Jaishri Blakeley, director of the Johns Hopkins Comprehensive Neurofibromatosis Center and the Johns Hopkins Neurofibromatosis Therapeutic Acceleration Program that researches two particular tumor types that frequently occur in people with NF1.
Organoids have shown promise, and the Nick Gilbert research center will be among the first to test whether they translate to clinical discovery quicker and with more accuracy than other models for NF1, she added.
When researchers grow multicellular organoids, they can test each of those cell types against multiple drugs, together and alone, to determine which cell type is responding to which drug, Blakeley said.
Private philanthropically financed programs for Type 1 neurofibromatosis are rare, she said.
The foundation is committing $190 million over 10 years for operations and research. It is also setting aside an additional $5 million in case of cost overruns and other unforeseen circumstances.
The Gilbert foundation's gift is a remarkable amount, Blakeley said, but spreading it out over the 10 years is equally important. The Gilbert Family Foundation has previously donated more than $100 million in grants toward a cure for Type 1 neurofibromatosis.
"The number is very impactful, certainly, because it allows you to think (of) really huge, audacious ideas," Blakeley said. "The thing that's most impressive to me is the 10-year commitment because science is frustratingly slow."
Researchers can develop great ideas and generate impressive preclinical data, but still need an extra five years to get it beyond that, she said. Most research programs don't have that length of support to cross that threshold, she said.
Targeting disease faces challenges
NF affects one in every 2,000 births across the world, and 4 million people are living with some form of the disease, Jennifer said, adding the severity of the disease varies from person to person.
Henry Ford's Dr. Adnan Munkarah said the condition is not rare, but rather infrequent. He said manifestations include skin discoloration, soft non-cancerous tumors under the skin, learning disabilities and visual impairment.
The Nick Gilbert Institute will be the first of its kind fully dedicated to neurofibromatosis, said Laura Grannemann, executive director of the Gilbert Family Foundation and Rocket Community Fund.
"It's hard to find a cure, and because the population who needs treatment is relatively limited, unfortunately, revenue opportunities for producing that treatment are also sometimes limited," she said.
MSU interim President Teresa Woodruff said the institute is an opportunity to "conjoin the strength of world-class academic, clinical research and health care."
Annette Bakker, president of the New York-based Children's Tumor Foundation dedicated to ending neurofibromatosis through research, estimated that there are a few thousand researchers and clinicians working on the condition around the world. The foundation has collaborated with the Gilbert Family Foundation in the past, and Dan Gilbert sits on its board.
Preclinical research models, such as organoids, are extremely important in developing new treatments for rare diseases, Bakker said. Investing in research for preclinical models will make neurofibromatosis an "attractive" target for pharmaceutical companies, she added.
"Taking existing models to quickly bring drugs from companies to clinical trials … is extremely important in rare disease," Bakker said.
As far as the stroke facility he and his wife plan to create, Dan Gilbert said the Shirley Ryan AbilityLab is where he sought treatment after his own stroke in 2019.
"I'm forever grateful to the doctors and nurses, staff, therapists," said Dan, who got up from a wheelchair to speak. "... There are many, many other patients who could not get all the rehabilitative care they needed because of the limited number of hours is not often covered by insurance."
Opening more care for strokes
Peggy Kirk, CEO of the of Shirley Ryan AbilityLab which has more than 40 care locations in the Midwest, said every year, tens of thousands of people in Detroit and surrounding communities survive daily conditions such as a stroke, brain or spinal cord injury, cancer and complications.
In 2020, there were 30,521 hospitalizations due to stroke in Michigan, according to the state hospital association, with Black residents being more likely to be stricken after adjusting for population, according to the Michigan Department of Health and Human Services.
"These figures are expected to grow as the population ages," Kirk said. "Our singular focus is helping patients regain their ability through intensive rehabilitation that leverages the best tools and technology really enhances their ability to function, to move, to communicate and participate in a meaningful way."
In order for new and current residents to fully access required services for stroke and spinal injury, the Gilberts also are creating a $10 million fund to increase access to rehabilitation care for low-income Detroiters, not related to NF.
"It was due to Dan's experience meeting people who were not fully covered and, unfortunately, had to limit their rehab," said Grannemann, adding it's unclear how many patients the low-income fund could help. "We know that one in four adults over the age of 25 will have a stroke, and that increases when you have a community with underlying conditions."
In Detroit, stroke deaths have plunged faster than the population, according to state statistics. Stroke deaths fell from 1,072 in 1980 to 380 in 2021, a 64.5% decline at a time when the city's population dropped 47% from 1.2 million to an estimated 632,464 residents.
Past support to fight neurofibromatosis
The Gilberts have been passionate advocates in the fight to end the genetic condition since Nick was born with NF1. Diagnosed at 15 months, Nick suffered through multiple brain surgeries, loss of vision and rounds of chemotherapy.
In 2018, he underwent an eight-hour operation and spent more than a month in recovery. After the surgery, Dan Gilbert tweeted out his son was recovering, and that his son's first question post-surgery was: "Did Cavs beat OKC?" The disease can be inherited, but none of the Gilberts' other four children have been diagnosed.
The Wednesday announcement also followed a $500 million commitment to improving Detroit neighborhoods in 2021.
The rehab facility and the research institute will be part of Henry Ford Health's $2.5 billion, 1 million square foot campus expansion in the New Center area over the next decade.
"It's a privilege to be here in our great city to advance health care for those we have the privilege to serve," Henry Ford Health System CEO Bob Riney said. "We could not be more excited to bring a global leader, Shirley Ryan AbilityLab, 33 years ranked the top rehab center in the world."
As part of the announcement, Riney said Henry Ford Hospital's new patient tower, which was revealed in February, will be taller than the Fisher Building, which is 441 feet tall.
"It really gives people a perspective of what dramatic addition to the Detroit skyline, but now we're adding three stories, so it will officially be taller than the Fisher," Riney said. "We know that what we're embarking on together would not be possible without the amazing generosity of donors like the Gilberts."
Gov. Gretchen Whitmer praised the Gilberts' announcement, saying the new Shirley Ryan AbilityLab will improve health for the state's residents and support hundreds of new jobs.
“I am grateful to the Gilbert Family Foundation, Henry Ford Health and Shirley Ryan AbilityLab for their collaboration to get this done. This new rehabilitation facility will help people recover from debilitating injuries and illnesses, and the new research institute named in honor of the late Nick Gilbert will help find a cure to neurofibromatosis," Whitmer said in a press statement.
City Council President Mary Sheffield noted a study by Wayne State University indicated that Detroiters and those in the neighboring suburbs between the ages of 50-59 are dying before their time, a 122% higher death rate than the rest of Michigan.
"The city's death rate notoriously speaks to the critical need of investing in health care," said Sheffield, who acknowledged her mother died from an incurable rare brain cancer. "I know firsthand the importance and the value of research in its ability to bring hope to the hopeless and make the impossible possible."
The key for Dan Gilbert was a commitment to help the state's largest city.
“We are here today because we believe Detroiters deserve the very best," he said. "We’ve spent our adult lives creating the best companies, attracting the most talented minds, rehabbing the finest buildings, developing the best programs and believe Detroiters should be able to access the best health care.”
srahal@detroitnews.com
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