Laurie Strongin
When Laurie Strongin’s son Henry died of a rare disease at the age of seven, she turned her family’s personal tragedy into a force for good. In 2003, she founded Hope for Henry, a nonprofit organization dedicated to bringing joy and positivity to very sick children. To date, Hope for Henry has thrown birthday parties, and arranged visits from star athletes, authors, and superheroes for more than 50,000 children, and importantly, helped them navigate their complex medical care. Strongin talks to us about running a mission-focused organization, the importance of sticking to core values and her goals for growth. She also helps us understand what everyday life is like for kids in long term care and offers tips on how anyone can help make things a little bit better.
What is the story behind Hope for Henry?
When Henry went to Minnesota for his bone marrow transplant, it was the first time in our lives that we had the opportunity to understand what life was like for kids who are chronically ill. It was eye-opening and enlightening, and very difficult. For two and a half years, we mostly lived in hospitals. I learned a lot of things that I did not understand before even though when I was in college, I spent a lot of time volunteering in the local Children’s Hospital in Ann Arbor. When you’re chronically ill, you’re not sick for a couple of days or a couple of weeks, but for years. The average length of treatment for a kid with cancer is three years. It’s isolating, and it’s terrifying. I learned that medical hospitals were set up to provide medical care for these kids, but there was no real recognition that there was no difference between Henry on a soccer field one day and Henry checking into a hospital and living in isolation one day later. He still wanted to do all the same things that he loved doing. He wanted to be with his friends and his brother. We figured out a way to bring many of the things that he loved in his life to his new life in the hospital.
How were you able to turn your personal tragedy into a force for good?
After Henry died, we felt a real desire, a sense of obligation, to bring some of the things that we learned through our personal experience to benefit other kids and families. Our intention was never just to help kids with the disease that Henry had, Fanconi Anemia, which is incredibly rare. There are only 1000 kids in the world with it. We wanted to help any child whose life was disrupted over a long period by illness. Grief is also a compelling driver. It can crush you if you’re really heartbroken over a loss as profound as the death of your child. I wanted to direct my incredible sorrow towards something positive.
What are the most important qualities of a nonprofit leader? How are they different from a for-profit business?
A nonprofit is not that different from a for-profit business. The only difference really is that the money that you raise goes back into the mission of the company as opposed to shareholders. Successful nonprofits should be run the same way that successful for-profit businesses should be run. However, I believe that there is a singular focus on the mission as opposed to making money. One of the most important characteristics that I think is required is a fine balance between persistence and patience, because some things like fundraising can take time and pushing harder and harder isn’t always the best way to accomplish your goals. You have to focus on your long-term goals in service to your mission.
What are your core values?
Our core values are putting the patient first, and delivering, honoring the mission and the commitment to quality programming. When we look for partners, we think a lot about what kind of a business that partner is running and if it is reflective of Hope for Henry’s values. We’re in the business of serving very sick children, so we are particular about what kind of companies we want to work with and receive money from. They have to be companies that value children, health, health equity, and access to health.
What type of people do you like to hire and why?
I like to hire people who over deliver and under promise – but promise a lot – who have a sense of humor, who have attention to detail, who are committed, reliable, honest, ambitious, scrappy, confident, and have a heart.
What Instagram filter would you use to motivate the people that you work with?
A superhero cape.
There are a lot of nonprofits working for very worthy causes. How do you stand out from the rest?
When I first started Hope for Henry, I was very aware of what other nonprofits who also were focused on serving very sick children were doing, and there wasn’t any other organization that was in the space that we are in. We are trying to reimagine how hospitals care for kids and look at the connection between healthcare and the provision of medical care, and the other services that help children heal in the long-term. We are the best in the business in what we do. We do a very good job communicating what makes us different and unique, and why what we’re doing is critical to kids’ ability to heal. I think it is that singular focus on mission. I think a lot of nonprofits let their mission creep into other things, and we have been very disciplined about sticking with our mission and constantly trying to evolve over time to be responsive to changing environments and changing needs, but again, while focusing on the mission, which is around patient quality of life and ability to heal.
What are your long term goals ?
Our goal is to be in every single children’s hospital in the country and serve every child who would benefit from our program.
What do children in extended hospital stays need most? How can you help them achieve their dreams?
Over time I’ve learned that making kids who are sick happy is very, very important, because they’re missing out on everything that makes life magical. Can you imagine, all of a sudden, you can’t leave your bedroom for three months, and nobody can come in and see you except maybe one of your parents? That stinks, right? No birthday parties, no movie theaters, no holidays, no school, no sports, nothing. That’s what these kids’ lives are like, and it’s really tough, and so entertaining them and making them happy and bringing normal childhood activities is essential. We do a lot of that, but I would say that the most critical need is to help them adhere to their very complex medical plans. If you’re very sick and you’re in the hospital, you probably have an IV, and you’re also still getting stuck with needles, you might have to have MRIs, and you might have to have surgeries. There’s a lot of medical interventions, poking and prodding, scary medical equipment and unfamiliar people constantly coming to your room and doing things that are scary and that hurt. We started to focus on providing incentives for kids to do all those things on time and as prescribed. If you have to take 26 medications a day, which is something that my child had to do, we have a program that helps provide incentives and rewards for kids so they take every one of those 26 doses of medicine when they’re prescribed and on time, so that they don’t struggle when they’re going to have a needle stick or so that they’ll go into the MRI machine without crying and without having to have sleeping medicine (sedation). I think all the ways that we can help kids navigate their very complex medical care, then acknowledge how hard they’re working and reward them for that hard work, is extremely important. That’s of course in addition to improving treatment and curing some of the most serious diseases, which is obviously critical.
What can their peers do to make things easier?
One of the things that is hard for kids who are suffering is that it feels like their friends’ lives are moving on without them, and that their friendships are fading away. That’s on top of all of the other things lost, such as their health, freedom, and independence. You can keep in touch with them and remind them that you’re still there for them, and you’re still friends with them. You can still play games online, or you can watch movies together. You can find things that you can do together, even if you’re apart. I think that’s something that COVID-19 taught all of us – how to try to be together even when you’re apart.
What do you wish more people understood about very sick kids?
The thing that people really don’t understand is how long these kids are sick. Kids with cancer are sick for an average of 1029 days. Think about how long it felt when we were all quarantining. It felt like forever. That’s what life is like for kids whose immune systems are weak and can’t go out in public.
What was your greatest challenge in school? And what is your greatest challenge today? Are they related any way?
My greatest challenge was sitting in a chair and focusing. I don’t like to sit for very long periods of time. I’m constantly thinking of new things to do and new ways to do things, so sitting at a desk and listening to someone talk is not my ideal way to learn. It has nothing to do with my challenges right now. I am an entrepreneur. Probably the reason I do what I do now is a reaction to how difficult it was just to sit there and listen to someone talk to me and tell me what to think about.
What was your biggest failure and what did you learn from it?
My biggest failure was my inability to save Henry’s life. And what did I learn from it? Sometimes you give something your all and it doesn’t always work out, but it doesn’t mean that it wasn’t time and energy and love well spent.
