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March 2, 2026
Children Can’t Wait: A Night That Proved Why
Reflections on CobiCure’s inaugural Impact Series event and the urgent mission driving our work
By Michele Cleary, CEO, Advancium Health Network & CobiCure
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On the evening of February 25, 2026, something remarkable happened in a room full of scientists, investors, clinicians, and advocates in New York City. These are people who rarely find themselves in the same room for a common purpose, yet on this day they sat together, listened deeply, and recommitted to a single shared mission: ensuring that children with rare and severe diseases do not wait for the care and treatments they deserve.
That unique moment came to life through CobiCure’s inaugural Impact Series event, “Children Can’t Wait: Reimagining and Accelerating Pediatric Innovation.” It was our first time gathering committed stakeholders. It will not be our last. And for everyone in that room, I believe it was the beginning of something far bigger than a single night.
The Timing Was Not Coincidental
Just three days after our event, the world marked Rare Disease Day on February 28, a global moment of solidarity with the ~300 million people worldwide living with rare diseases, the majority of whom are children. It is a day for awareness, but awareness alone is not enough. What rare disease patients and their families need is action.
That is the very reason CobiCure was created: to bring forward treatments and devices that will change lives, and in many cases, save them.
“For families living with these diseases, the need is immediate and deeply personal.”— Jim Flynn, Managing Partner, Deerfield
Why CobiCure Exists
The pediatric rare disease landscape is marked by a painful paradox. In many cases, the science to help these children exists and is very often within reach. But the commercial incentives to develop treatments for small patient populations are rarely strong enough to sustain the research and development required to bring those treatments to life. Promising therapies stall. Families are left waiting.
CobiCure was founded to step into that gap. As a pediatric-focused health innovation nonprofit company, we accelerate the development of treatments that are too often overlooked by traditional funding and clinical development pipelines. What makes us different is our founding partnership with Deerfield, one of the world’s leading healthcare investment firms. That relationship gives us something most nonprofits simply do not have: access to scientific expertise and industry networks that can move promising pediatric treatments from discovery to reality. We don’t just advocate for change. We are positioned to help fund and drive it.
A Father’s Story Grounded the Evening in Truth
No amount of data or strategy captures the stakes of this work the way one father’s voice can. Robert Snetiker, Partner, General Counsel and Chief Compliance Officer at Deerfield, opened the program not as a legal executive, but as a parent who navigated the rare disease system firsthand.
His story is the story of too many families: the uncertainty, the delayed answers, the absence of clear pathways, the exhausting search for specialized care in a system that was not designed with their child in mind. It is a story that reminds every clinician, researcher, and investor in the room that behind every data point is a family counting on us to move faster.
Robert’s willingness to share his experience was a gift to the entire room. It set the tone for everything that followed.
“These children need a village, and we are building one together.”
Michele Cleary, CEO, CobiCure & Advancium Health Network
The Panel: Where the System Breaks and How We Fix It
Our panel discussion, “Breaking Through: Overcoming Barriers to Pediatric Innovation,” brought together three leaders who work at the sharpest edges of this problem every day.
Emma Moran, Head of MedTech at CobiCure, shared the unique de-risking work CobiCure does to move pediatric technologies from the lab to the clinic, navigating the regulatory gaps and evidence requirements that commercial developers rarely have the patience or mission alignment to address.
John Parker, Founder and Managing Director at Springhood Ventures, spoke to the investment model. Traditional funding structures reject small markets. The solution, as John described it, lies in philanthropy, mission-aligned capital, and blended finance structures that allow progress to happen where conventional funding simply cannot.
Charlie Roberts, Cancer Center Director and Executive Vice President at St. Jude Children’s Research Hospital, illuminated the clinical translation challenge, where even groundbreaking discoveries at world-class institutions face trial feasibility barriers when patient populations are small. His team’s work with adaptive trial designs, centralized IRBs, and embedded research within clinical care offers a model for what collaborative innovation can look like.
Expertly moderated by Gary Brewster, CFO of BrYet US, Inc., the conversation drove home a powerful point: none of us can do this alone. It will take the kind of cross-sector coalition that gatherings like the CobiCure event help forge.
A Keynote That Reframed What Is Possible
Brienne Kugler, Senior Vice President at Royalty Pharma, delivered a keynote that reframed how we think about the relationship between philanthropy and investment in life sciences. Brienne has led more than $11 billion in royalty transactions over her career, and has worked at the intersection of biotechnology, academic institutions, and pharmaceutical companies to advance innovation across the sector.
In her fireside chat with me, she challenged the room to think about industry and nonprofit collaboration not as sequential or siloed, but as genuinely integrated from the earliest stages of development. Her message was that patient communities, nonprofits, and investors can and must work together far earlier than they typically do, and that philanthropic capital is not just a bridge to commercial investment. It is a force multiplier.
For an organization like CobiCure, still early in building this ecosystem, Brienne’s experience and perspective offered both validation and a road map.
“Philanthropy makes that possible, not simply as funding, but as partnership and shared commitment over time."
What This Moment Calls For
We are at an inflection point in pediatric rare disease innovation. The scientific tools available today, from advanced genomics to adaptive trial design to novel funding structures, mean that some of the children who might have been told there was no hope a decade ago now have a genuine chance. But this will only be true if the healthcare innovation ecosystem around them steps up.
Philanthropists need to be willing to support organizations doing the hard, unglamorous work of de-risking therapies and devices before they are commercially viable. Investors need to see long-term value in a pipeline built on mission as well as margin. Clinicians and researchers need to be willing to share data, collaborate on trials, and prioritize access for the children who need it most. And advocates, partners, and community members need to stay connected to this work and help amplify it.
The conversations that began on February 25th need to continue. The relationships formed in that room need to deepen. The momentum of that evening needs to be translated into something durable.
Join Us
If you were moved by what you heard that evening, or if you are reading this and feel called to be part of this mission, we want to hear from you. CobiCure’s work depends on the collective support of people who believe that children deserve the same quality of innovation and investment as any other patient population.
There are many ways to get involved. You can support our work financially, helping us fund the de-risking and early development work that no one else will do. You can partner with us as a researcher, clinician, or institution, bringing your expertise and networks to bear on problems that require collaboration to solve. You can introduce us to others who share this mission and help us grow the village.
Whatever your path, the first step is a conversation. Reach out to us at cobicure.org to learn more, explore a partnership, or simply tell us your story. No commitment is too small. These children cannot wait for the perfect moment. Neither can we. If you are ready to make a direct impact today, click here to donate to the Children Can’t Wait campaign.
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Michele Cleary is the CEO of Advancium Health Network and CobiCure, a nonprofit dedicated to accelerating pediatric medical device and therapeutic development for rare diseases. CobiCure’s inaugural Impact Series was held on February 25, 2026, in New York City, sponsored by Deerfield.
