When it comes to matters of the heart, people often respond with a gut reaction rather than a well-thought-out plan of action.

When Ilan Ganot, a banker at JPMorgan Chase (JPM) learned his two-year-old son was diagnosed with Duchenne Muscular Dystrophy, a rare form of the disease, his world stopped.

“It was the worst thing in the world. In my life. No question,” Ganot said.

With no real background in medicine, but a heart full of hope, Ganot vowed to stop at nothing to help his son live.

“It’s the focus for me, the fact that I go home every day and have a patient at home who deteriorates in front of my eyes."

- Ilan Ganot

A reaction from the heart, yes. But one also driven by intense dedication and well-planned determination to succeed.

From Bank to Bedside

Ganot’s son, Eytani, was born a healthy, happy baby boy. But a few months into his life, Ganot and his wife Annie began to notice differences from other children.

“(He showed) delays compared to his age group,” Ganot said. “Usually kids crawl at six months, he crawled at a year. Usually kids walk at a year, he didn’t walk until about 18 months.”

Once the realization set in, Eytani went through a series of evaluations, and the diagnosis at the end was “low tone,” meaning the young boy was just slow to develop.

But the Ganot family felt like there was something else going on.

“Usually (with that diagnosis, kids) don’t end up with a much bigger problem later on,” Ganot said. “But then he turned two-and-a-half and a doctor who was monitoring him thought that maybe there was something worse and sent him to do a few tests. And that’s when he was diagnosed.”

It’s a disease found in one in 3,500-6,000 males, and is  usually diagnosed early in life thanks to the early signs like delayed motor skills and speech, frequent falling, and difficulty getting up, according to the U.S. Centers for Disease Control. The ability to walk deteriorates around 7 years old. Those who go on to live into their teens and young adult life are usually confined to a wheelchair, while leg and trunk activities generally require assistance by the teen years.

At the point of his son’s diagnosis, Ganot had a full-fledged  career as a hedge fund equities specialist at one of the world’s biggest banks.

But for his son’s future, he put it totally on hold.

“A few weeks were very bad and we were really sad. I would stay home from work,” he said. “JPMorgan said, ‘Take as much time as you need.’ And I took it literally. I helped at home with my wife, taking the kids to school,” he said.

After a brief, much-needed getaway to clear their heads, the Ganots came back to their lives in London refreshed and full of clarity. That’s when they began reading research and online studies, making phone calls to companies working to find cures and treatments, and talking with drug developers directly.

“I started to network my way into understanding what was going on, who was doing what, interesting programs, why there wasn’t anything that was working, where the money was missing, what talent was needed…I started forcing myself into it, and it quickly became clear to me I was not going back to work at a bank,” Ganot said.

Leveraging Connections with Extreme Focus 

Now, a year and a half post-diagnosis, Ganot has a successful business called Solid Ventures whose sole purpose is to help find a treatment or cure for the kind of muscular dystrophy from which his son suffers.

The name of the company, Solid, is a translation of his son’s name which means “solid” or “strong” in Hebrew. A bit of an irony, but Ganot chooses to look at is a more of a prophecy of what’s to come – hope that he will be successful in finding a way to help his son live longer than the 20- to 30-year maximum children who are diagnosed are often given.

“I’m pretty sure it’s a big change that I will help facilitate,” Ganot said. “Maybe I already am…slowly but surely the story is presenting itself to me and I keep pushing the agenda.”

Once Ganot was committed to leaving his job in investment banking, he decided the place with  the best resources and talent to help combat DMD was in Boston. So he and his family moved stateside and set up shop. But his relationship with JPMorgan Chase didn’t come to an end once he left his post.  The bank is now an investor in Solid.

Proof of Ganot’s intense dedication is this: In just more than a year, Solid started and completed its first round of funding, raising more than $17 million. Very aware of the fast growth and rapid raising of funds, the devoted father and former banker said he wouldn’t have been able to get where he is today without the help from a team of experts.

“I’m acutely aware I don’t have a PhD in this disease, and  drug development needs scientists. So, I got a very amazing science advisory board to help me out,” he said.

He added that his team consists of a developer who also teaches at the Massachusetts Institute of Technology and has the added bonus of a background in venture capital. Also a part of his team is Joel Schneider, who Ganot says is “the smartest guy out of Harvard,” who has a PhD in the disease.

For Ganot, building Solid was all about leveraging his contacts, to maximize positive outcome -- a familiar practice and a page he took from his JPM banker playbook.

“In life, it’s all about people. It’s all about who you work with, and how you motivate them and how everybody works to get it to deliver. That’s the goal, and something I’m pretty good at. I surrounded myself with brilliant scientists.”

Catalyzing Change

For now, Solid is finished raising its first round of capital, and is now looking for real results.

“We’re looking to get our hands on the science and be active in developing the drugs (for the  disease) ourselves. It can be in collaboration with partners and people in the community and industry. But we’re going to be actively involved and lead the effort,” Ganot said.

He added, though, one of the real positives is that he and his team of scientists don’t have to  start from scratch. He said it’s about finding the best of the best programs out there doing research and drug development and helping them advance to clinical trials. At that point, the hope is attracting the attention of the big drug companies who would then finish the drug development process and take them to market.

Ganot said his company is evaluating 60 different drugs at the moment, and is in “very advanced dialogues” with larger companies that could potentially grow into partnerships and collaborations, though he declined to name specifically what companies those might be.

“Part of the challenge is to figure out which drugs are interesting and which are not. There are a few in good hands getting good capital. But the thing about this disease is we need a lot of drugs to address different aspects in different boys. Think of it like an HIV cocktail. It’s complicated,” he said.

But the drive to deliver a treatment and a cure is a very real reminder every day.

“It’s the focus for me, the fact that I go home every day and have a patient at home who deteriorates in front of my eyes,” Ganot said. “When I go to work the next day, I’m more focused, more angry, more determined to get the job done. Unfortunately, that’s not what characterizes the process (for big companies). It’s lots of egos and lawyers that hinder the process. When parents get involved, things are more punchy.”

As for his son, Eytani is preparing to celebrate his fourth birthday this summer, and so far, the disease has yet to significantly cripple his young life. But the Ganots know it’s only a matter of time.

“He’s doing good,” Ganot said. “He’s got a big problem, which, in a disease like this, will only get bigger over time. And we’re going to have to intersect and change that.”

But for now, Ganot said he’s the proud father of a happy, sweet boy who’s getting ready to go to pre-school and loves to play with his sisters.

“He’s great,” Ganot said.

Follow Victoria Craig on Twitter @VictoriaCraig.