About Us
About Us
Rona's Story
Rona Edwards was one in a million. When she was five, Rona got a one-in-a-million diagnosis. Despite their name, rare diseases aren’t actually all that rare. Approximately 10% of the US population lives with a rare disease and the majority begin in childhood.
Rona beat the odds in a lot of ways. Eight out of 10 rare diseases have a known genetic origin. Hers did not. Less than 10% have a treatment. She had two options, one of which was cutting edge. It typically takes more than four years to get a diagnosis. Rona was diagnosed in four months.
Thirty percent of children with a rare disease will die before their 5th birthday. Rona died from complications from her treatment two weeks after she turned six.
Rona's greatest wish was to be Princess for a Day at Disney. Her second greatest wish was to help kids like her. She and her father began recording “Rona’s Rockin’ Fun Lab” after her diagnosis so other children could learn about science and transplants from a kid.
In a year full of uncertainty, one thing surprised us more than most: Rona’s last breath was not the worst thing we saw. It was the death of her spark that was hardest to watch.
This is where you come in. Rona never made it to Disney, but with your help we can make her second greatest wish come true by creating a world in which we balance the magic of science and the magic of living for critically ill, hospitalized children.
About Us
Who We Are
Rona’s FUN LAB is a nonprofit organization founded by parents who lived inside the pediatric healthcare system, and saw firsthand how much children and families are asked to carry.
We bring together lived experience, clinical insight, creative thinking, and deep respect for medicine to help improve how care is delivered to critically ill children.
Our work is not about criticizing healthcare. It is about strengthening it by making space for joy, honesty, nuance, and humanity alongside scientific excellence.
About Us
The Mission
To protect quality of life for critically ill children by ensuring emotional safety, understanding, and dignity are embedded into pediatric care.
About Us
Our Approach
We partner with hospitals, child life teams, and providers to support more human-centered care. We advocate for better communication and shared decision-making. We work to lighten the burden families carry during and after serious illness.
Everything we do is guided by the principles that emerged from Rona’s life and from the days that mattered most.
About Us
How We Help
Our work focuses on protecting childhood and supporting families by partnering with care teams, shaping more humane policies, and advocating for better communication, understanding, and balance in pediatric care.
Every program, partnership, and initiative is grounded in lived experience and guided by the principles Rona inspired.
Partnering with Care Teams
We believe that joy, play, and emotional support are not extras in medical care, they’re essential. That’s why we partner with pediatric hospital child life teams to make sure every child gets access to the moments that make healing more human.
From palliative care resource matching and provisioning, to equipping teams with tools and guides for newly bereaved families, we aim to make your hardest work a little easier.
Connect at the link below to learn more about how we can help you.
Institutional Initiatives
Making space for every kid to just be a kid means shaping an environment where that's possible.
We work directly with hospitals to shape institutional policies that help to create physically and emotionally safe spaces for patients.
We help support key aspects of pediatric care, including: family advisory committee structures and engagement, designing impactful infection control programs, and serving as a sounding board for administrators and teams looking to approach questions from a new angle.
Public Speaking
Rona wanted to help other kids like her. She recorded a series of videos to explain her condition and treatment.
To continue that work, Lindsey, Co-Founder & Chief Momatologist, combines her professional background and personal experience to deliver impactful presentations. From Grand Rounds, to Conference Keynotes, these engaging presentations help to drive change on behalf of kids like Rona. (See the speech that launched Rona's FUN LAB here.)
If you are looking for a speaker for your next event, connect below.
About Us
Why FUN LAB?
For some people, hospitals are the most magical places on earth. They are where science makes miracles happen.
But for kids they can feel like the least magical. Kids in hospitals have no privacy, lose control over their own body down to how, what and when they eat and sleep, are spoken about instead of to, and grow up far too quickly. Rona spent about 1 out of every 12 days of her life in a hospital. Those days mattered.
So we have created six principles to do better by our youngest patients — one for each of Rona’s birthdays.
FUN
Palliative care brings humanity into healthcare. It is not about end-of-life. It is about including quality of life in the treatment equation. Those teams make magic.
And magic translates to happier children and happier families. Children and families that have access to palliative care services report less stress and anxiety.
Building healthcare systems that utilize and respect the principles of palliative care creates space for kids to be kids. Even the really sick ones. We want them to have some fun.
UNDERSTANDING
When a clinical trial or potentially life-threatening treatment is your only option, the benefit of “your terminally ill child may survive” outweighs any risk. It is inherently coercive. In these instances, the process of informed consent needs to be less about the form, and more about ensuring families understand what could happen.
We help providers understand why it is critical to have open, honest conversations about what the real options and likely outcomes are for their patients so that every parent has the information they need to make the right choices for their child.
We want providers to go for understanding, every time and throughout treatment.
NUANCE
People want to live with a disease instead of being defined by it. And that is how it should be. Yet the language used with us in a healthcare setting is often cold and sterile.
And having conversations about disease and prognosis in front of our kids can affect their mental health.
We are working to change how we speak with and about critically and terminally ill children and their families.
Nuance matters. We can help you adjust your language.
LIGHTEN
Rare diseases account for nearly half of total healthcare costs because they require longer, more complex care than other conditions. Out of pocket costs for people living with a rare disease are 3–5x higher than for their peers, rivaling those for treating cancer.
Being sick in this country is expensive. Beyond co-pays there are extra food costs due to dietary restrictions, more expensive childcare, specialized clothing and equipment, transportation to appointments, meals during hospital stays, housing close to a treatment center, and lost wages. And that just scratches the surface.
And for a long time after treatment ends, the bills come — regardless of the outcome.
We work to create hospital policies and provide services that lighten the load of patients and their families.
ALLY
Affected families are experts in living with a rare condition. This matters because many providers they encounter on their journey will have never seen the condition before.
When it comes to rare disease, shared decision making is the name of the game, both in the lab and in the clinic. Engaging people with lived experience early and often in a medical research setting will get potentially life-saving treatments approved and into patients’ hands faster. In the clinic, involving parents in care can be life saving.
We create spaces for experts in science and experts in lived experience to engage meaningfully to create better outcomes for kids.
BALANCE
Training in palliative and end-of-life care aren’t required courses in medical school, so we don’t teach enough doctors how to manage death well.
And we need to. Because when families need to make hard decisions, we need to be sure all providers are equipped to be clear and honest about what the real options are.
There are multiple ways to understand the phrase “do no harm.”
We ask providers to consider all aspects of that phrase to have honest, balanced conversations when helping families make treatment decisions.
About Us
BOARD OF DIRECTORS
We are fortunate to have the support of our Board of Directors, who are all passionate about improving the lives and care of children with critical illnesses. Click each image to learn more about the team.
About Us
OUR ADVISORS
It takes a village to make a FUN LAB. We are thrilled to have the support of medical and technical all-stars who are helping to shape our programs. Click the image to learn more about our team.
Your support helps to balance the magic of living and the magic of science. Whether you’re a donor, provider, or advocate, there is a place for you at Rona’s FUN LAB.
Your support helps bring joy, dignity, and humanity into hospital spaces where they are needed most.