Press & News

Three years ago this month, I spent every day counting down to Rona's sixth birthday. There were Elf on the Shelf antics in the hospital room, even though it wasn't December. We planned a birthday party in the ICU, complete with party boxes so friends and family could celebrate with us virtually. There was a virtual meet-and-greet with Doug the Pug because, if you knew Rona, you know she would have thought that was pretty much the greatest thing ever. None of it changed why w

What does pediatric palliative care really mean? In this episode of Magic Wand Moments, Lindsey Wahlstrom sits down with Dr. Gary Tatz, a Pediatric Critical Care and Palliative Care physician who cared for Rona during her illness. Together, they explore one of the most misunderstood specialties in medicine, discussing how pediatric palliative care supports children and families throughout serious illness—not just at the end of life. In this conversation, they discuss: • What

In this month's Magic Wand Moments, Lindsey Wahlstrom and Samtubia Edwards reflect on one of the ideas that has become central to Rona's FUN LAB: agency. What does it mean for children to have a voice during serious illness? How can healthcare teams create opportunities for choice, participation, and dignity, even when treatment itself isn't optional? Together, Lindsey and Sam share stories from Rona's treatment, discuss why agency became so important to their family, and exp

I have a string with 967 beads on it. Each bead represents something done to my daughter Rona’s body in the nine months before she died: transfusions, chemotherapy, radiation, nights in the hospital, and needle pokes, among others. Here’s the part I don’t always say out loud: Rona hated her string of beads. We never made it past adding the first sixty while she was alive. She didn’t want to track what was happening to her body in that way, and I didn’t have the bandwidth to k

In this deeply personal episode of Magic Wand Moments, Lindsey Wahlstrom sits down with Lauren Nittoli, Rona's child life specialist and the hospital's first Bereavement Coordinator. Lauren was there during treatment, but her impact extended far beyond the hospital room. Through her compassion and guidance, she helped Lindsey begin navigating anticipatory grief—a foundation that would later shape both her healing and the creation of Rona's FUN LAB. Together, they discuss: • W

Over the past month, I have been in a lot of conversations about trust. In Modena with the FACILITATE team, the discussion centered on what it means to return individual trial data in ways that center participants instead of systems. On a BioNews panel, the focus turned to “levers” for trust with rare disease communities. At a virtual IRB conference, I gave a keynote on informed consent that pushed attendees to think beyond the form and shift from disclosure to understanding.

In this special Father's Day edition of Magic Wand Moments, Lindsey Wahlstrom sits down with Samtubia Edwards, Rona's dad. Together, they reflect on fatherhood, pediatric illness, grief, and the experience of loving a child through extraordinary circumstances. The conversation explores what made Rona so special, the realities of navigating treatment as a father, and what families need from the people and systems around them. This episode is the first in what we hope will beco

In this special board member spotlight, we're introducing Dale Wahlstrom, Secretary of the Rona's FUN LAB Board. To many people, Dale is a former life sciences executive with decades of experience helping organizations grow and thrive. To us, he's simply Papa. As Rona's grandfather, he experienced firsthand the challenges, heartbreak, and moments of joy that shaped our family's journey through serious illness. Today, he helps guide Rona's FUN LAB as we work toward a world whe

In this episode of Magic Wand Moments, Lindsey Wahlstrom sits down with Kelly Sitler, a child life specialist, childhood cancer survivor, and advisor to Rona's FUN LAB. Kelly brings a unique perspective to pediatric healthcare, having experienced serious illness as a child and now supporting children and families professionally through her work in child life. In this conversation, Lindsey and Kelly discuss: • The impact of child life services on pediatric patients • What chil

June is PTSD Awareness Month. For most people, PTSD calls to mind combat veterans or survivors of violent trauma. But there's another population quietly living with post-traumatic stress disorder: children who spend weeks or months in pediatric intensive care units, and their families. Research shows that up to 28% of children develop PTSD following admission to a PICU, with symptom rates significantly higher at up to 62% (Colville, G., & Pierce, C. Intensive Care Medicine, 2

In this episode of Magic Wand Moments, Lindsey Wahlstrom sits down with Bridget Chapital, creator of Bright Ideas Loading — a series designed to help children understand clinical trials. Bridget’s work focuses on making clinical research more accessible for kids by giving them language and context for what they’re experiencing. In this conversation, Lindsey and Bridget discuss: • Why children need to understand clinical trials • How understanding impacts fear, trust, and part

In July 2023, I learned the power of three simple words: I withdraw consent. By that point, I had spent over a decade working in clinical research. I had guided thousands of participants through informed consent forms that all included some version of the same line: you may withdraw consent at any time, for any reason. Of course, that’s not what we hope people will do. In research, retention often matters more than recruitment. But that summer day, sitting in a hospital room

In this episode of Magic Wand Moments, Lindsey Wahlstrom sits down with Jon and Jenn Wall, founders of Zach’s Bridge. Zach’s Bridge is dedicated to supporting parents navigating the loss of a child, creating space for connection, remembrance, and community. In this conversation, Lindsey, Jon, and Jenn discuss: • What bereaved parents need after loss • The role of connection and community in grief • How support can extend beyond the clinical setting Learn more: zachsbridge.org

This Sunday is Mother’s Day (you’re welcome for the reminder). What you may not know is that last Sunday was Bereaved Mother’s Day. It’s not widely talked about. Like most things related to hard things, it exists quietly – recognized deeply by those who need it, and largely invisible to everyone else. I hate that I know it exists. And I’m also deeply grateful that it does. That’s the paradox of access: you don’t fully understand the value of something until you need it. And w

We’re excited to introduce Deirdre BeVard, a member of the Rona’s FUN LAB Board. Deirdre brings deep experience across patient advocacy, healthcare strategy, and innovation, with a focus on how we design systems that better serve patients and families. As we continue building Rona’s FUN LAB, having leaders like Deirdre helping guide our work ensures that what we create is not only meaningful, but sustainable and scalable. In this short video, Deirdre shares more about her bac

In this episode of Magic Wand Moments, Lindsey Wahlstrom sits down with Lilly Grossman, Founder of Beyond the Box Advocacy and a disability rights advocate. Lilly’s work focuses on advancing access, inclusion, and equity for individuals with disabilities — challenging how systems, including healthcare, support (or fail to support) the people they serve. In this conversation, Lindsey and Lilly discuss: • What disability advocacy looks like in healthcare today • Why access and

As I reflect on Music Therapy Month, one conversation stands out most. Laurie Park, who was Rona’s music therapist, and I had a long conversation ( this is the much shorter version) where we talked about concepts in music therapy that helped me better understand my own journey. One key topic? Entrainment. Laurie was there to help Rona, yes, but she was also helping me. My vitals were entrained to Rona’s. When she was in distress, I was in distress. It is a concept any mother

In this episode of Magic Wand Moments , Lindsey Wahlstrom sits down with Laurie Park , Board Certified Music Therapist and Licensed Creative Arts Therapist — and Rona’s music therapist. This conversation is deeply personal. Laurie was part of Rona’s care team, but more than that, she was part of how Rona — and her family — experienced that care. Through music therapy, she helped create moments of connection, calm, and even joy in the middle of something incredibly difficult.

I think we do not talk enough about the mental health impacts of rare disease on both rare kids and their parents. For kids, that can mean missing school, feeling different from their peers, enduring repeated appointments, and trying to make sense of a body that does not always cooperate. For parents, it can mean living in a near-constant state of worry, making decisions no one should have to make alone, and carrying the emotional weight of a diagnosis that may still not have

In this episode of Magic Wand Moments , Lindsey Wahlstrom speaks with Jessica Radetsky , Founder of Broadway Hearts. Jessica’s work brings music into hospitals to support not only children, but their families as well. In this conversation, we discuss: • Why music matters in pediatric care • How it supports both kids and caregivers • The role of joy and connection in medical settings At Rona’s FUN LAB, we believe in balancing the magic of science with the magic of living — and