There are several titles Dan Gilbert can go by: businessman, philanthropist, billionaire, NBA team owner. But of all the titles, Gilbert is most proud of is that of father.
Gilbert, chairman of the board of Rocket Companies and majority owner of the Cleveland Cavaliers, has five children. Their eldest son, Nick, died in 2023 after a long battle with neurofibromatosis, or NF, a rare disease that causes tumors to grow in nerve tissues.
NF is one of the most prevalent rare genetic disorders in the US, affecting approximately 1 in every 2,000 births, or approximately 170,000 Americans. The condition can cause tumors to form anywhere on patients' nerves at any time in their lives.
There is no cure.
Gilbert said her son Nick developed his first tumor shortly after he was born.
“The first was in his optic nerve, between his eye and his brain,” Gilbert said. “It didn't grow for the first five years, until it was about six years old, and then it started growing.”
That tumor led Nick to his first chemotherapy treatment. But it wouldn't be the last.
On his tenth birthday, Nick learned that he would soon need to undergo his first major surgery. Gilbert said her son responded to the difficult news as he did to all of life's challenges, with optimism and a sense of humor.
“[Nick] He just wanted to know if there was macaroni in the hospital,” Gilbert said. She added: “He always believed he was going to get through all of this. And so do we.”
Dan and Nick Gilbert representing the Cleveland Cavaliers in the NBA Draft Lottery.
After surgery, Nick underwent several rounds of chemotherapy and radiation therapy. But he didn't let that stop him from achieving his goals.
Despite his battle with NF, Nick was still able to maintain close friendships, attend Michigan State, and even work as an intern in the business development unit of his father's company.
But in 2018, the disease was catching up with him.
“There were some tumors that we just missed,” Gilbert said. “We had two major surgeries that year. And from that point, until 2023, when we lost him, there were only surgeries and chemotherapy.”
Gilbert says they tried everything, but a tumor in his brain stem grew too quickly to handle.
“These were not cancerous tumors. They are benign, but they can grow and cause all kinds of damage.”
Towards the end, the tumor affected Nick's ability to breathe, hear and see. Gilbert says what frustrated Nick the most was the inability to communicate.
“He couldn't hear, he couldn't see… he couldn't communicate. His main goal was to communicate with people.”
Honoring the life of Nick Gilbert
For Gilbert, who considered his son his best friend, losing Nick was a devastating blow. And he was not alone in his pain. Before he died, Nick had become a symbol of preservation and determination in two cities: his hometown of Detroit and in Cleveland, where he had become a fixture at Cavs games.
“Everyone loved him. Everyone who knew him loved him. He loved everyone.”
Gilbert said it was frustrating to have billions of dollars and access to the best doctors in the world, but still not be able to stop this devastating disease from taking someone he loved.
“That's kind of sobering,” Gilbert said. “You can't fix everything, so try to take one step in front of the next, do the best you can.”
Nick was a regular at Cav events and became known for his trademark bow tie.
Despite all his success, Gilbert is no stranger to hardship. In 2019, he suffered a major stroke that required extensive rehabilitation. And just last year, he finalized his divorce from his wife Jennifer. Gilbert says the marriage was another casualty of Nick's death.
But Gilbert has tried to take it all in stride, focusing on the parts of his life where he can have control.
“I mean, when you're dealt a card, like I was dealt or my son was dealt, you just take the next card and try to play it… I mean things you can't control. So you work on the things you try to control,” Gilbert said.
Something Gilbert and his family have worked hard to control is how Nick is remembered. They have taken several steps to ensure that Nick's memory lives on. They opened Gilly's Clubhouse in downtown Detroit. Gilly was the nickname Nick was given by his friends. The unique sports bar was Nick's vision and a project he was developing before he died.
Gilbert's other children, Nick's brothers, started The Gilly Project, a nonprofit community organization dedicated to Nick's honor.
And Gilbert made curing NF a key pillar of the Gilbert Family Foundation, the Detroit-based philanthropy that Gilbert and Jennifer launched in 2015. Those efforts, enhanced by an annual benefit in Detroit, have raised millions to find a cure.
“We raised $12 million in one night. We keep breaking records. We contribute about $50 million a year to research.”
Gilbert's search for a cure
A permanent banner for Nick was unveiled at Rocket Mortgage FieldHouse, the home court of the Cleveland Cavs.
The money raised through the Gilbert Family Foundation has had a real impact. Philanthropy has been a key partner of the Children's Tumor Foundation, one of NF's leading research organizations. CTF calls Gilbert's involvement in NF research “critical” and adds: “Gilbert has been an important supporter and partner, and we are grateful for [Gilbert Family Foundation’s] continued commitment.”
Gilbert himself served on CTF's board of directors for more than 20 years and was a key funder of the research that would become the first FDA-approved treatment for inoperable NF tumors. Currently, there are two approved treatments of this type and many more in development.
But Gilbert believes the CTF's work can go beyond finding new treatments. He remains hopeful that a cure may be within our reach. “I think there is [a cure]. We're working on something,” he said. And that's been Gilbert's driving mission since he became involved in NF research. “We're diving into the foundation and finding cures for this disease, so that other children and other families don't have to continue suffering from it,” he added.
Gilbert says watching his son overcome his own suffering taught him the importance of perseverance, a lesson that will be important as Gilbert prepares for the task ahead.
“He was my hero,” Gilbert said of Nick. “In his legacy and in his honor, to this day we continue to do everything we can to eradicate this disease from the planet.”
More information about neurofibromatosis can be found at Children's Tumor Foundation. For more stories like this, sign up for the CNBC Cures Newsletter.
