Press & News

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

I’ve spent the month posting content about play in pediatric care. It’s Child Life Month, so it made sense to focus on the topic. But as the month winds down, I want to make the case for why every month should be Child Life Month. Rona’s FUN LAB is about something much bigger than me, or Rona, or our n of 1 story. It’s about bringing to light the importance of rethinking how we deliver care at a system’s level. As Aaron Horowitz so beautifully put it: Play is the language of

Meet one of our incredible advisors: Lauren Nittoli MS, CCLS Lauren is a Certified Child Life Specialist, who works wonders with the children and families for whom she provides care. We know of Lauren's impact firsthand: She was Rona's Child Life Specialist. In her intro video, she shares why the mission of Rona's FUN LAB feels so important right now. We’re honored to have her perspective helping guide this work. Welcome to the team, Lauren !

In this episode of Magic Wand Moments , Lindsey Wahlstrom speaks with Mary Jenner , Founder & CEO of The Butterfly Pig. Mary Jenner's work focuses on helping children understand medical experiences through storytelling, education, and play. They discuss why children deserve explanations they can understand, how storytelling helps prepare kids for medical care, and why emotional readiness is essential in pediatric healthcare. ✨ New Magic Wand Moments every two weeks.

Patient engagement was never meant to replace providers. It was meant to meet them. “Patient engagement” has been a buzzword in clinical research for as long as I’ve worked in the field.Chances are, if you’ve ever been to a patient engagement conference, you will have heard a discussion that boils down to: “Why are we still talking about this?” After living through Rona’s diagnosis and treatment, I’d like to propose a theory: The pendulum, once firmly rooted in “doctor knows

Meet one of our incredible advisors: Kelly McConologue, CCLS Kelly is a Certified Child Life Specialist who brings personal experience to her work. She puts children and families at the center of care. In her intro video, she shares why the mission of Rona's FUN LAB feels so important right now. We’re honored to have her perspective helping guide this work. Welcome to the team, Kelly!

Our Chief Momatologist spoke with Aaron Horowitz, Founder and CEO of Empath Labs, about the importance of pediatric engagement in clinical trials. They discuss the role of therapeutic play in helping children emotionally prepare for medical procedures, the impact of personal experiences on professional purpose, and the need for child-centric care in healthcare. Aaron shares his insights on innovations in clinical research, patient retention, and the importance of speaking the

It struck me last year that rare disease day falls on Rona’s half-birthday. We did half-birthdays up: half a cake, half the presents, a birthday celebration in Rona’s classroom. The year Rona was diagnosed, as we were finding our sea legs of what it meant to be living rare, there was a huge snowstorm on her actual half birthday, which meant we spent the whole day celebrating the things other than her diagnosis that made her unique. I spend a lot of time sharing the story of w

Bernadette brings years of leadership in healthcare innovation and a powerful commitment to making sure families are not an afterthought in research and care. In her intro video, she shares why the mission of Rona's FUN LAB feels so important right now. We’re honored to have her perspective helping guide this work. Welcome to the team, Bernadette!

We sat down with Erica Barnes , Executive Director of the Minnesota Rare Disease Advisory Council , to talk about how lived experience can shape real policy change. After losing her daughter, Chloe, Erica turned grief into advocacy — helping elevate rare disease awareness and push for systems that support the entire family, not just the diagnosis. We talk about: Why Rare Disease Advisory Councils matter Shifting mindsets in healthcare What comprehensive care should really me

At Rona’s FUN LAB, we focus on creating breakthroughs in joy, human connection, and quality of life alongside the incredible scientific breakthroughs already underway in pediatrics. In the coming weeks, you’ll meet the board members and advisors who help bring this mission to life and learn what drew them to this work. In this video, meet our Chief Momatologist Lindsey Wahlstrom to learn more about our work and the story behind it. We’re so glad you are here.

Around the country this week, kids will dress up for the 100 Days of School celebration. Rona had big plans for that celebration in 2023. For her first Halloween, we had dressed Rona up as a crazy cat lady (her father and I were each cats), so we knew how to make the wig and had the glasses to sell the look on hand. The weekend before spirit week kicked off, Rona developed a high fever and was admitted to the hospital for the first of six times before our admission for trans

I had dinner with a friend the other night. One of her family members was admitted to the hospital with concerning symptoms a few weeks ago, and an ER workup revealed advanced cancer. As she described what her family has been navigating — the constant coordination of appointments, treatments, and second opinions — I was transported back to that same period three years ago, when we were living this reality with Rona. I know many of you can relate. Getting to a diagnosis, and t

Read our 2025 Annual Report and watch the highlight reel below: