As April 2023 approached, Alex Hersham, the co-founder of Zencargo, a digital freight forwarding firm, was surprisingly calm about the birth of his first child. He hadn’t even arranged his paternity leave, highlighting his laid-back approach to impending fatherhood. “I just thought we would manage, and everything would be fine,” he reflects.

Initially, labor proceeded without a hitch. Hersham recalls being relaxed enough to engage with an early version of ChatGPT while awaiting the arrival of his son. “As a founder, work is constant in your mind. Even during downtime, you’re often thinking about it,” he shared.

However, everything changed dramatically once Abe was born on April 9, presenting with severe skin conditions. Hersham described seeing his newborn with no skin on a third of his body, leading him to question if skin regenerated post-birth. He felt chaos enveloping them, not knowing what lay ahead.

Following the delivery, the family faced an overwhelming number of challenges. Abe was swiftly transported to the neonatal intensive care unit and later to Great Ormond Street Hospital, where he remained hospitalized for a month. He was diagnosed with epidermolysis bullosa (EB), a rare and untreatable skin disorder resulting in fragile skin that is susceptible to blisters and potential skin cancer, commonly known as “butterfly skin.” This condition was not detected during Natasha’s pregnancy scans or genetic tests.

“It was an incredibly distressing period,” Hersham said. “Rebuilding our lives took time, but the support from the Great Ormond Street team was instrumental in that journey.” He recognized the need to step back from his obligations at Zencargo, a company that he had spent seven years nurturing alongside his childhood friend Richard Fattal. In 2022, the London-based firm grossed £60 million and has partnered with notable clients like Beauty Pie and Vivienne Westwood.

“I reached out to my team, explaining, ‘We have a baby boy, but he’s facing significant challenges, so I’ll be out for at least a week.’” As it turned out, his leave extended much longer. He admitted to having limited communication with Richard during this crisis as it was a time ruled by trauma; he struggled to come to terms with the situation.

Gratitude overwhelmed him for the Zencargo leadership team, especially Fattal, for their unwavering support. Hersham noted, “Richard stepped into the role of co-CEO immediately and continued as the sole CEO in January of this year. I have taken the position of president, which allows me to stay connected to strategic and financial matters.” Additionally, he remains involved in AI initiatives at Zencargo.

Although the decision to step away from his CEO role was gradual, he realized after Abe’s diagnosis the urgency to learn about the condition. At eight weeks old, he traveled across the U.S., consulting with experts in EB and others living with the condition.

“I visited ten cities in a week. It was a challenging experience, as I encountered others affected by EB, and couldn’t help but reflect on what that meant for my son. That was a profoundly painful realization, even more so than the day of delivery,” Hersham recalled.

Meanwhile, back at home, Natasha battled the daily reality of caring for Abe, which included intense and painful two-hour wound management sessions.

Driven to make a difference for Abe and others affected by EB, Hersham began assembling a team. Having not taken formal science courses since high school, he acknowledged his limitations in biochemistry.

In November 2023, he co-founded Nonsense Tx with industry veteran Ivan Fedyunin. The company aims to address the so-called “nonsense” mutations linked to numerous rare diseases afflicting around 40 million people globally. Nonsense Tx focuses on creating small-molecule therapies aimed at finding better treatments for EB and other rare conditions.

Initially, Hersham balanced this new venture with his responsibilities at Zencargo after being advised by family friends to refrain from quitting too hastily.

As Hersham’s focus shifted towards Nonsense Tx, his involvement with Zencargo gradually reduced over 18 months. When he finally disclosed his decision to the board and staff, the reaction was unsurprising to him: most recognized that it was overdue.

Hersham commended Fattal on performing excellently in his new role, stating, “To be honest, the business has thrived under his leadership compared to my time.”

Transitioning from the tech sector to biotech has been a rigorous learning journey. Hersham approached this endeavor with the mindset of an entrepreneur, identifying opportunities where his business acumen could be beneficial rather than focusing on patient advocacy or scientific expertise.

He recognized the necessity to persuade venture capitalists that investing in rare diseases could be profitable. So far, he has raised £500,000 for Nonsense Tx, with plans for a new funding round soon. “To raise the typical $300 million required for drug development, we need venture capital to see potential returns,” he explained.

Moreover, he believes in the importance of educating investors about pricing strategies for specialized medications, asserting that high prices are essential for sustaining the development of drugs for rare diseases.

Hersham acknowledges that charities play a vital role in supporting affected patients and their families. In light of this, he, along with Natasha and their friends, are undertaking a 600-mile charity walk on June 14, aiming to collect £500,000 for the charity Cure EB. Each participant will traverse distances ranging from 18 to 37 miles, all commencing from Land’s End to John O’Groats.

The initiative has garnered support from many of Zencargo’s clients and Hersham’s network, including donations of products by Beauty Pie and outdoor gear from Regatta.

Despite his challenges, Abe is thriving, according to his father. “He’s remarkable. We were uncertain he’d walk due to significant wounds at birth, yet he’s now running around. Concern also surrounded his speech affecting tissues in his mouth, yet he engages in full conversations at the age of two. Although there are tough days filled with pain, he perseveres. He’s truly an inspiration,” Hersham shared.

Alex and Natasha Hersham, alongside their family and friends, are planning a 1,000 km charity walk on June 14 to support Cure EB.