There are several titles that Dan Gilbert can go by: entrepreneur, philanthropist, billionaire, NBA team owner. But of all the titles, the one Gilbert’s most proud of is that of father.
Gilbert, who is the Chairman of the Board of Rocket Companies and is the majority owner of the Cleveland Cavaliers, has five children. His oldest son, Nick, died in 2023 after a long battle with neurofibromatosis, or NF, a rare disease that causes tumors to grow on nerve tissues.
NF is one of the most prevalent rare genetic disorders in the U.S., impacting approximately 1 in every 2,000 births, or roughly 170,000 Americans. The condition can cause tumors to form anywhere on the nerves of patients at any point in their lives.
There is no cure.
Gilbert said his son Nick developed his first tumor shortly after he was born.
“The first one was on his optic nerve, between his eye and his brain,” Gilbert said. “It wasn’t growing for the first five years, until he was close to six years old, and then it started growing.”
That tumor led to Nick’s first bout of chemotherapy. But it would not be his last.
On his 10th birthday, Nick learned that he would soon need to undergo his first major surgery. Gilbert said his son responded to the difficult news as he did to all challenges in life, with optimism and a sense of humor.
“[Nick] just wanted to know if there was macaroni in the hospital,” Gilbert said. He added, “He always believed that he was going to get through all this. And so did we.”
Dan and Nick Gilbert representing the Cleveland Cavaliers at the NBA Draft Lottery.
After the surgery, Nick underwent several rounds of chemo and radiation therapy. But he didn’t let that stand in the way of 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 at his dad’s company.
But by 2018, the disease was catching up with him.
“There were some tumors, that just kind of got away from us,” Gilbert said. “We had two major surgeries that year. And from that point on, until 2023 when we lost him, there were just surgeries and chemo.”
Gilbert says they tried everything, but a tumor on his brainstem grew too quickly for them to manage.
“These weren’t cancerous tumors. They’re benign, but they can grow and cause all kinds of damage.”
Towards the end, the tumor impacted Nick’s ability to breath, hear and see. Gilbert says it was the inability to communicate that frustrated Nick the most.
“He couldn’t hear, he couldn’t see … couldn’t communicate. He was all about communicating with people.”
Honoring Nick Gilbert’s life
For Gilbert, who considered his son his best friend, losing Nick was a devastating blow. And he was not alone in his grief. 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.
“He was loved by everybody. Everybody that met him loved him. He loved everybody.”
Gilbert said it was frustrating, having billions of dollars and access to the best doctors in the world, but still not being able to stop this devastating disease from taking someone he loved.
“That’s a sobering thing,” Gilbert said. “You can’t fix everything, so you just try to take one step in front of the next, do the best you can.”
Nick was a fixture at Cav’s events, and became known for his signature bowtie.
Despite all his success, Gilbert is no stranger to hardship. In 2019, he suffered a major stroke that has required extensive rehab. And just last year, he finalized a divorce with his wife Jennifer. Gilbert says the marriage was another casualty of Nick’s death.
But Gilbert has tried to take it all in stride, maintaining a focus on the parts of his life that he can have agency over.
“I mean, when you’re dealt a card, like I was dealt with the stroke or my son, you just have to get 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 that Gilbert and his family have worked hard to control is how Nick is remembered. They’ve taken several steps to ensure that Nick’s memory will live on. They opened Gilly’s Clubhouse in downtown Detroit. Gilly was a nickname given to Nick by his friends. The upscale sports bar was Nick’s vision and a project that he was developing before he died.
Gilbert’s other children, Nick’s siblings, started The Gilly Project, a community based non-profit dedicated to Nick’s honor.
And Gilbert made curing NF a key pillar of the Gilbert Family Foundation, the Detroit-based philanthropy Gilbert and Jennifer launched in 2015. Those efforts — punctuated by an annual benefit event in Detroit —have raised millions towards finding a cure.
“We raised $12 million in one night. We keep breaking records. We’re contributing about $50 million a year to research.”
Gilbert’s quest 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. The philanthropy has been a key partner of the Children’s Tumor Foundation, one of the leading NF research organizations. CTF calls Gilbert’s involvement in NF research “critical”, adding, “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 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. Today, there are two such approved treatments, with many more in development.
But Gilbert thinks CTF’s work can go beyond finding new treatments. He remains hopeful that a cure could be within reach. “I do believe there is [a cure]. We’re working on something,” he said. And that’s been the mission driving Gilbert ever since he became involved with NF research. “We dove into the foundation and finding cures for this disease, so other kids and other families don’t have to continue to suffer from it,” he added.
Gilbert says that seeing his son work through his own suffering taught him about the importance of perseverance, a lesson that will be important as Gilbert steels himself for the task ahead.
“He was my hero,” Gilbert said of Nick. “In his legacy and his honor, we’re still, to this day, trying our hardest to wipe this disease off 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.
