I still remember the exact moment the doctor said the words: “Your son has Adrenoleukodystrophy.”
Time stopped. ALD is a rare, devastating neurometabolic disease affecting the brain, spinal cord, and adrenal glands. There is no cure. The doctor explained there were two possible paths: cerebral ALD, which is often fatal in early childhood, or a progressive form that slowly destroys the nerves controlling the ability to walk. Every parent’s nightmare, delivered in a single sentence. In August 2025, that sentence became my reality.
I had spent more than two decades building leadership teams for some of biotech’s most important companies. I understood this industry deeply. And in that moment, none of it felt like enough. I was no longer just someone who worked in biotech. I was a father desperately needing everything this community had to offer.
So, I did what I have always advised others to do in moments of crisis: I turned to my network.
What happened next genuinely moved me. Industry leaders like Mark Levin, Bob Tepper, Josh Boger, and John Maraganore gave me something they did not owe me, their time, their attention, and a real willingness to help. Some offered introductions. Some shared perspective. One invited me into his home to think through how we might trace halted ALD programs or unlock intellectual property that might otherwise remain dormant. Scientists who had spent years working on ALD gave me their time without hesitation, meeting with me to explore real possibilities. Every conversation felt urgent. Every lead mattered. Every person who picked up the phone gave me something I badly needed: hope.
This is the Boston biotech community I know. Brilliant, yes. But just as importantly, deeply generous.
I had seen that generosity before, though never from this side of it. My career in biotech began because of a colleague whose daughter was diagnosed with cystic fibrosis. Her story moved me, and her family’s fight gave me purpose. Together, we founded a company helping biotech’s build leadership teams driven by a strong “why”. Over the years, I watched the CF Foundation and Vertex Pharmaceuticals do something that once seemed impossible, they turned a devastating genetic disease into a manageable one. My business partner’s daughter is alive and well today because of that work. That triumph shaped everything I believed about what this industry could accomplish.
When my son was diagnosed with ALD, I thought about her immediately. It turns out that Cystic fibrosis and X-linked adrenoleukodystrophy are caused by mutations in related genes within the same broader transporter family. The science is distinct, but the biological relationship is real. And if the CF community could find a way through, then so can we.
That belief is not simply wishful thinking. It is what I have watched this industry do, repeatedly, when the right people decide that something matters enough to pursue. Progress in biotech rarely happens by accident. It happens because a scientist pursues a promising idea. Because an entrepreneur takes the risk. Because an investor believes. Because an executive builds the right team at the right moment. And it happens because communities band together, raising money, rallying around families, and refusing to let important programs die on the vine. The CF Foundation is proof of what is possible when philanthropy and science move in the same direction. I have had a front row seat to that process for over twenty years, and I have never been more convinced that it can happen for ALD.
My son is now past the age at which cerebral ALD carries its highest risk. I am deeply grateful for that. But I think about the families who are still living inside that fear right now. ALD affects approximately 1 in 17,000 people, and far too few treatment options exist. Too many promising programs have been halted, shelved, or deprioritized before families ever got answers. When that happens, hope gets shelved along with them.
That is why I remain active in this industry. Not because it is my profession, though it still is. But because it has become my purpose in the most personal way imaginable. My work today is not only about placing great leaders into important roles. It is about helping uncover the people, programs, and companies that may have a role to play in the fight against ALD. Every connection I make, every conversation I have, every door I help open is in service of that mission.
To everyone in this community doing the work every day, the researchers, the builders, the investors, the executives, your efforts reach further than you may realize. Behind every program, every molecule, every difficult decision about whether to advance or halt a trial, there are families sitting with real uncertainty. Families like mine. Your work has the power to change lives. It may save someone’s child. It may save someone you love.
My own journey in biotech began with someone else’s child. Today it is shaped by my own. And if there is one thing this community has taught me, it is that when biotech comes together with urgency, skill, and genuine heart, extraordinary things can happen.
Please stay inspired. The work you do matters more than you know.
About Author:
Rob Patten is the co-founder of Genepool Networks, a biotech executive leadership recruiting firm. His career in biotech was shaped by personal experience on both sides of that equation — a colleague’s daughter diagnosed with cystic fibrosis drew him to the industry decades ago, and his own son’s recent diagnosis with a rare neurometabolic disease renewed his commitment to it. A recipient of the 2016 Cystic Fibrosis Breath of Life Award, Rob lives on the NH Seacoast with his family.