Real Stories: Why CobiCure’s mission matters to our CEO Mark Veich

CobiCure has a simple yet profound mission: to cure rare and life-threatening diseases in children. This mission isn’t just noble—it’s essential. Giving children access to innovative therapies is crucial to ensuring they live fulfilling, productive lives and giving their families peace of mind. Investing in the early stages of clinical development, when treatments are still in testing and far from certain, means bringing more options closer to reality. Yet, my commitment to this cause isn’t just professional. It’s deeply personal.

I was born with multiple congenital heart conditions that required specialized care and several surgeries. I can only imagine the hope and fear my parents felt each time they handed me over to a surgeon. Thanks to the skill and dedication of my doctors, I survived and thrived. But not every child is as fortunate. Of the 15 million American children with rare diseases, a third won’t live past their fifth birthday. Now, decades later, I’m profoundly aware of how lucky I am—and driven to improve the odds for these young patients.

The term “rare disease” can be misleading. In medical terms, a disease is considered rare if it affects fewer than 200,000 people annually in the U.S. While that might seem small compared to conditions like heart disease (120 million affected) or diabetes (35 million), it still represents millions of individuals and families. Moreover, there are nearly 11,000 rare diseases, with new ones identified every year. Together, these conditions affect more than 30 million Americans—half of whom are children. That’s 15 million kids, 15 million families, and countless communities impacted. For families, the focus isn’t on statistics; it’s on one child—their child.

Imagine being told your child has a disorder that few have heard of, with little research, few treatment options, and no proven therapies. For many families, the fight against rare diseases begins with grassroots efforts—rallying communities and raising funds to save one precious life. At CobiCure, we aim to amplify those efforts, combining philanthropy with the expertise and resources needed to develop treatments—not just for one child, but for millions.

One of CobiCure’s first initiatives was focused on a therapy for babies born with functional single ventricle (FSV) disorder, a rare congenital heart defect affecting about six in every 10,000 births. Corrective surgery for FSV is intricate, requiring multiple operations in a child’s early years, and a third of affected children don’t survive childhood. We partnered with a company developing a revolutionary device to replace open-heart surgeries with a less invasive alternative. This company had the engineering talent to design the device but lacked the funding, clinical trial experience, and regulatory expertise needed to bring it to market. That’s where CobiCure stepped in—providing the resources and guidance necessary to turn innovation into reality.

I can’t help but think of my own parents as they faced the prospect of sending me into the operating room for yet another surgery. What would it have meant to them to know there was a safer, less invasive option? What would it mean to the families of today? This is why I do what I do. Every time we can help a child avoid the pain and risk of invasive procedures, we honor the courage of parents and the resilience of children fighting these battles.

CobiCure is more than a nonprofit. It’s a bridge between innovation and impact, a catalyst for hope and change. By bringing together scientists, engineers, investors, and philanthropists, we’re making the seemingly impossible possible. For the children and families we serve, it’s not just business—it’s life-changing.

I’m not just an advocate; I’m living proof of what’s possible when children have access to exceptional care and innovation. That’s why I’m committed to CobiCure’s mission. Together, we can bring the best of science, medicine, and humanity to children who need it most.

We can do this—for the kids, for their families, and for the communities that love them.

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