Gilbert, owner of the Cleveland Cavs, turns grief for his son into a search for healing

There are several titles Dan Gilbert can wear: entrepreneur, philanthropist, billionaire, NBA team owner. But of all the titles, Gilbert is proudest of his father’s.

Gilbert, chairman of Rocket Companies and majority owner of the Cleveland Cavaliers, has five children. His eldest son Nick died in 2023 after a long battle with neurofibromatosis, or NF, a rare disease that causes tumors to grow on nerve tissue.

NF is one of the most common rare genetic diseases in the United States, affecting about 1 in 2,000 births, or about 170,000 Americans. The disease can cause tumors to form anywhere on the patient’s nerves at any point in their life.

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 didn’t grow for the first five years until he was almost six, and then it started growing.”

This tumor led to Nick’s first round of chemotherapy. But it wouldn’t be his last.

On his 10th birthday, Nick found out he was about to undergo his first major surgery. Gilbert said his son responded to the difficult news, as he does to all life challenges, with optimism and a sense of humor.

“[Nick] “I just wanted to know if the hospital had macaroni,” Gilbert said. He added: “He always believed he would get through it all.” And so do we.”

Dan and Nick Gilbert represent 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 struggle with NF, Nick was able to maintain close friendships, attend Michigan State University, and even work as an intern in the business development department of his father’s company.

But in 2018 the illness caught up with him.

“There were some tumors that were just able to escape us,” Gilbert said. “We had two major surgeries this year. And from that point until we lost him in 2023, it was just surgeries and chemotherapy.”

Gilbert says they tried everything, but a tumor in his brain stem grew too fast for them to handle.

“These weren’t cancerous tumors. They’re 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 it was the inability to communicate that frustrated Nick the most.

“He couldn’t hear, he couldn’t see… couldn’t communicate. All he cared about was communicating with people.”

Honoring the life of Nick Gilbert

For Gilbert, who considered his son his best friend, the loss of Nick was a devastating blow. And he wasn’t 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 everyone. Everyone who met him loved him. He loved everyone.”

Gilbert said it’s frustrating to have billions of dollars and access to the best doctors in the world but still not being able to prevent this devastating disease from killing someone he loves.

“It’s a sobering thing,” Gilbert said. “You can’t fix everything, so you just try to take one step before the next and do your best.”

Nick was a fixture at Cavs events and became known for his signature bow tie.

Despite all his success, Gilbert is no stranger to difficulties. In 2019, he suffered a severe stroke that required extensive rehabilitation. And just last year he divorced his wife Jennifer. Gilbert says marriage was another casualty of Nick’s death.

But Gilbert has tried to take it all in stride and continue to focus on the parts of his life that he can control.

“I mean, when you’re dealt a card like I was dealt with the hit or my son, you just have to take the next card and try to play it… I mean things you can’t control. So you work on the things you’re trying to control,” Gilbert said.

Something Gilbert and his family have worked hard on is the way Nick will be remembered. They have 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 he developed before his death.

Gilbert’s other children, Nick’s siblings, founded the Gilly Project, a community-based nonprofit 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 — punctuated by an annual fundraiser in Detroit — have raised millions to help find a cure.

“We raised $12 million in one night. We keep breaking records. We donate about $50 million a year to research.”

Gilbert’s search for a cure

A permanent banner for Nick was unveiled at Rocket Mortgage FieldHouse, home of the Cleveland Cavs.

The money raised through the Gilbert Family Foundation has made a real impact. The philanthropy has been a key partner of the Children’s Tumor Foundation, a leading NF research organization. CTF calls Gilbert’s involvement in NF research “critical,” adding, “Gilbert has been an important supporter and partner, for which we are grateful.” [Gilbert Family Foundation’s] ongoing commitment.”

Gilbert himself served on the CTF 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 believes CTF’s work can go beyond finding new treatments. He remains hopeful that a cure may be within reach. “I believe that it is [a cure]. “We’re working on something,” he said. And that is the mission that has driven Gilbert since he became involved in NF research. “We have been involved in the foundation and looking for cures for this disease so that other children and other families do not have to continue to suffer from it,” he added.

Gilbert says he learned the importance of perseverance watching his son deal with his own suffering, 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 are trying our best to eradicate this disease from the planet.”

For more information about neurofibromatosis, visit the Children’s Tumor Foundation. For more stories like this, sign up for the CNBC Cures newsletter.

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