Social Impact Heroes: Why & How Scott and Pammy Kramer of ‘Dancing While Cancering’ Decided To Change Our World
We have one mission; to bring joy to the inpatient hospital experience for children with cancer. The primary way we do that is through our Smile Packs. Every newly diagnosed pediatric cancer patient at 18 hospitals across 12 states receives a Smile Pack upon their diagnosis. Inside, they’ll find some special items to help them transform their hospital room into a playroom; the same items we used when Maddie was diagnosed. Each Smile Pack is a reminder that while they may not be able to control their disease, they can still control the way they live. To date, we’ve delivered Smile Packs to more than 1,000 newly diagnosed pediatric cancer patients and we couldn’t be more proud of the joy Maddie has given people.
As part of my series about “individuals and organizations making an important social impact”, I had the pleasure of interviewing Scott and Pammy Kramer.
Scott and Pammy Kramer founded a nonprofit called Dancing While Cancering in honor of their daughter, Maddie, after she passed away from cancer at three-and-a-half years old in January 2018. They decided to create a lasting legacy to spread her vibrant positivity with other families during their lowest moments. Now, the Chicago parents are spreading Maddie’s joy in 18 hospitals across the country by supplying Smile Packs for pediatric cancer patients, a bright green backpack filled with the tools to make a hospital room feel like home.
Thank you so much for doing this with us! Can you tell us a story about what brought you to this specific career path?
We founded Dancing While Cancering in memory of our daughter, Maddie, who passed away at just three-and-a-half years old from a rare form of cancer in January 2018. From the moment Maddie passed, we committed ourselves to ensuring her life would be remembered as an inspiration. Less than one year later, we launched our nonprofit, Dancing While Cancering, in hopes of helping other kids battle cancer the way Maddie battled hers — with joy.
When Maddie was being treated at Lurie Children’s Hospital in Chicago, we turned her hospital room into a playroom with music, streamers and some of her favorite toys and games from home. Doing this allowed her to continue dancing, singing and doing all the silly things Maddie loved to do. She inspired our Smile Packs, which are provided to each incoming pediatric cancer patient at our 18 partner hospitals across 12 states. Inside each bright green backpack is a wireless speaker, musical instruments, room decorations and a note from us reassuring parents that kids can still be kids, even as they battle cancer.
Can you share the most interesting story that happened to you since you began leading your company or organization?
The only thing more isolating than pediatric cancer is pediatric cancer during a pandemic. One of the most unexpected aspects of our work was the realization that our mission has taken on an entirely new level of importance during the COVID-19 crisis. Families who were already isolated because of cancer are now burdened with even more life-altering restrictions — no visitors allowed, one parent in the room at a time, no outside gifts and most hospital playrooms have been closed. Many kids and families are left to battle their diagnosis from the confines of their sterile and sheltered room. As a result, our mission of being a resource for joy and a source of a smile has taken on added meaning we never could have anticipated.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
We still remember our first hospital party. We brought along some arts and crafts and fun treats to help bring a few smiles. We came very organized and learned within minutes the kids had other plans as they started putting stickers all over our volunteers’ faces! The lesson learned is one we’ve seen time and time again; kids just want to be kids.
Can you describe how you or your organization is making a significant social impact?
We have one mission; to bring joy to the inpatient hospital experience for children with cancer. The primary way we do that is through our Smile Packs. Every newly diagnosed pediatric cancer patient at 18 hospitals across 12 states receives a Smile Pack upon their diagnosis. Inside, they’ll find some special items to help them transform their hospital room into a playroom; the same items we used when Maddie was diagnosed. Each Smile Pack is a reminder that while they may not be able to control their disease, they can still control the way they live. To date, we’ve delivered Smile Packs to more than 1,000 newly diagnosed pediatric cancer patients and we couldn’t be more proud of the joy Maddie has given people.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
The story that sticks with us the most is one of a newly diagnosed patient in Atlanta. The family had recently received some bad news on prognosis, and they were very much struggling with the new reality. But then, our Smile Pack arrived! The patient immediately took to the musical instruments and started smiling and laughing, which was a first in almost 5 days. The next day, the entire room was decorated, music was playing through the speakers and the patient was wrapping himself up in the streamers like a fun game. The parents said decorating their room made it feel like home and that the Smile Pack inspired them to go to the store and get even more items to help keep up that mindset. According to their Child Life Specialist, this room went from dark and gloomy to music, smiling and dancing. That’s exactly what Dancing While Cancering is all about.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
1. Raise awareness.
Not many people realize that the very treatment used to save a child’s life after a cancer diagnosis is the same treatment that greatly harms their quality of life. On account of their suppressed immune systems, many pediatric cancer patients are unable to leave their hospital floor, and sometimes their room itself, in order to decrease the risk of infection. That means their resources for joy are limited to whatever that room or that floor has. If more people understood this reality, perhaps more resources for joy could be directed towards pediatric oncology programs.
2. Increase funding for cancer research.
Our sincere hope is that one day our organization does not exist because someone finally rids the world of this disease. Pediatric cancer funding generally makes up just 4% of the federal government’s spending on cancer research. This needs to change.
3. Be there for your friends and family who are touched by this disease.
Pediatric cancer is an utterly isolating and gut-wrenching experience. What gets families through is the love and support of their community. Be there for these families, send a text message, give them a meal. Whatever you can do, each bit makes them feel less alone and more loved.
How do you define “Leadership”? Can you explain what you mean or give an example?
Leadership means doing the right thing the right way. There was no doubt in our mind after Maddie passed that doing the right thing for her, and for all kids battling cancer, was to make their journey more joyful. As for the right way to do it, we just followed Maddie’s lead which was to bring joy to everything we do.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
1.) Even your best ideas won’t always hit, but that doesn’t mean you failed.
When you create something with all your heart, ideas just pour out of you and they become part of your identity. As a result, when a good idea doesn’t work out, it’s easy to feel like you failed or your idea wasn’t good enough. Neither is true.
2.) Don’t measure your success by your number of followers.
Social media is a powerful tool. When you begin a new concept, it’s easy to judge your impact by how many people decide to follow what you’re doing online. While access to followers is an incredible resource and a metric for popularity, the impact you are having on the world should not be measured by your number of followers.
3.) You can’t do it all.
When you first come up with an idea for a new business, it’s very easy to want to make every major decision yourself. Every bit of the idea is an extension of you, but none of us should feel required to do it alone. So form a team, lean on your team and make decisions as a team.
4.) Be open-minded to others’ ideas.
We all have different personalities, approaches to different situations and thoughts on the best way to tackle a challenge. When someone else on your team has an idea, even if it’s not what you initially thought, do not immediately shut it down. Take a moment (or two!) to digest their suggestion. Why might it be a good choice? Every idea is worthy of listening to and potentially choosing as the best path forward, even if your initial reaction wasn’t positive.
5.) Learn from your mistakes, don’t ignore them.
If something goes wrong or a project doesn’t work out, don’t ignore it. Instead, understand why it went wrong and why it didn’t work out. That way, you don’t repeat the same mistake next time and you often learn something new in the process.
If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
“We are living that movement as we speak through our nonprofit. For us, Maddie’s story is not just one of cancer but of life and moving forward in the face of life’s biggest struggles. Maddie shows us the way, and it’s through a healthy dose of smiling, singing and dancing. In 2018, we published a book in Maddie’s honor called Maddie’s Miracles: A Book of Life. Every day, Maddie’s story is bringing good to more and more people, and it’s an honor to continue to shine her beautiful light.”
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
There is a quote that sits atop our website at dancingwhilecancering.org that says it all; ‘You can’t always choose the music life plays for you, but you can choose the way you dance to it.’ We often say that Dancing While Cancering is not just an organization, it’s a mindset of choosing hope over despair and of choosing to be dancing while cancering.
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
Thich Nhat Hanh is a Buddhist monk who wrote a number of incredible books, including Peace Is Every Step. His messages of the power of mindfulness and presence in daily life are nothing short of incredible.
How can our readers follow you on social media?
We love our Instagram page, @dancingwhilecancering. Every week, we share how pediatric cancer patients are able to #BattleWithJoy. Each post is inspirational and incredible.