Why This Billionaire You've Never Heard of Is Tackling a Disorder You've Never Heard of

Those letters by Giving Pledge signatories often give us a great glimpse into what motivates individual philanthropy, while also providing big hints of what to expect from a donor in coming years.

Take Dan Gilbert, the 52-year-old Michigan billionaire founder of Quicken Loans. Quicken is still running strong and the nation's largest online mortgage loaner made $80 billion in loans in 2013. With a net worth of $3.8 billion, Gilbert isn't yet known for his philanthropy but if you're an NBA fan you're likely aware of the controversy surrounding an open letter he wrote to his former player and NBA star Lebron James. 

Gilbert was fined for that and the contrite Cleveland Cavalier owner donated $100,000 to a local youth charity. Case closed. 

Actually, not really. As it turns out, there's plenty more to Gilbert's giving story and it seems to be rooted in something way more substantive than basketball. Dan Gilbert has a teenaged son named Nick who was born with neurofibromatosis, or NF, a genetic disorder that causes the spontaneous growth of tumors on nerves throughout the body. As Gilbert and his wife Jennifer explain in their 2012 Giving Pledge letter: "Had our son not been born with NF then we never would have known about the condition nor been in any position to help other kids with the disease." 

To that end, Dan Gilbert and his wife established The Gilbert Family Neurofibromatosis Institute at the Children's National Medical Center (CNMC) in Washington D.C in 2007. CNMC is part of a larger consortium of top-tier pediatric hospitals in the Children’s National Health System. 

Now Gilbert is deep into NF treatment and research, which often takes on an interdisciplinary tone, given the complexity of the disorder. Geneticists, neurologists and opthalmologists, among others, work at the Gilbert Family Neurofibromatosis Institute serving children and adults alike. The institute also has the largest NF summer camp. At the start of 2014, Jennifer and Dan funded inaugural professorships in neurofibromatosis for three doctors with the intent of pulling more research faculty into the institute. 

While Gilbert's personal stake here makes NF a priority, Gilbert has gotten interested in other types of cancer and diseases that afflict children as well. He's on the boards of the Children’s Tumor Foundation, the Cleveland Clinic, and the Children’s Hospital Foundation (also part of CNMC). With assets that have steadily risen to nearly $9.3 million as of 2012, the Children's Tumor Foundation has set up a system of matching donations and recently raised $35,000 to which Gilbert added his own $35,000. 

We've seen this movie enough times to tell you how the plot unfolds: The more Gilbert dives into complex and important medical challenges, the more money he'll likely give to empower the researchers he meets and get answers to crucial questions. Philanthropy often builds on itself that way: Somebody gets pulled in for personal reasons, but then their horizons expand along with their ambition to have an impact. 

We'll be watching where Gilbert goes with that larger fortune of his. Our bet is that much bigger giving lies ahead, maybe soon rather than later.