Social Impact Heroes: How Kim MacNeill, President of The Ross K. MacNeill Foundation is helping to battle brain cancer in children

Leadership is bravely, selfishly, and confidently setting a goal that’s higher than anyone feels it should be and then fearlessly pursuing it with everything you’ve got. It must be in concert with the mission of inspiring others to run in pursuit along with you. This is what I think makes leadership exciting and terrifying, but […]

Leadership is bravely, selfishly, and confidently setting a goal that’s higher than anyone feels it should be and then fearlessly pursuing it with everything you’ve got. It must be in concert with the mission of inspiring others to run in pursuit along with you. This is what I think makes leadership exciting and terrifying, but worth it. It means running with grit, on fumes.

I had the pleasure of interviewing Kim MacNeill, President and co-founder of The Ross K. MacNeill Foundation (R33M™). She has led this successful charity for pediatric brain cancer research for 5 years, surpassing $1,000,000.

Thank you so much for doing this with us! Can you tell us a story about what brought you to this specific career path?

This is my third “career” of sorts, the first 18 years I was with a healthcare corporation, the second 18 years in my dream job as a stay at home Mom for my children, and this, I describe, as the career I was pulled into. By that I mean, pulled by circumstance not by choice. Brain cancer barged into my 7-year-olds life in 2009. Upon his passing in 2013, my role in the foundation is my promise kept to Ross.

Can you share the most interesting story that happened to you since you began leading your company?

I’m sure you hear this a lot, but there are so many! Here is a favorite… In 2017 we began looking for office space in downtown Chicago. Our charity is national in scope, and we are funding research nationally so opening an office in the city was important to support our mission. We toured several amazing locations, but the last one of the day stunned us. It was at 333 N. Michigan Avenue (anything with “33” in it connects with us), had a Chicago Blackhawks store located on the second level, was the largest and least expensive space, and is owned by the Chicago Blackhawk’s owner Rocky Wirtz. When you look into our history, you’ll see that we have a very special relationship to hockey and to the Chicago Blackhawks. Making this address home for R33M™ was an easy decision!

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?

When you don’t have a neuro-oncology background, it is pretty easy to collect funny mistakes. Many times I have attempted to include neuro-onc terms in speeches finding myself murdering the pronunciation! My lesson learned… repeat/practice the pronunciation a million times, and when I get locked up in an “-ology” mess, just giggle and say “let me just spell this for you”. The audiences seem to relate and respect my honest effort.

Can you describe how your organization is making a significant social impact?

The mission of R33M™ is to end pediatric brain cancer by funding research to develop innovative, non-toxic therapies to save lives. Let me say this another, more direct way. Our impact is to contribute to research that will not only save a child from the victory of brain cancer, but to be sure that same child receives non-toxic therapies so that their survivorship is healthy and not suffocated by debilitating challenges that severely alter their remaining life.

Wow! Can you tell me a story about a particular individual who was impacted this cause?

Because of HIPA, we are not allowed to know individual patient impacts. But I can tell you about how much money we have raised and where the funds were directed …

Are there three things the community/society/politicians can do help you address the root of the problem you are trying to solve?

Community: Their involvement to date has been stunning and amazing. What we need from the community is their ears. We have watched people moved as they hear our story and the state of the diagnosis for children. That response is nearly always “how can I help/how can I get involved/what do you need”. THAT’S what we need from the community.

Society & Politicians: Raising awareness is an offspring of our mission as you cannot raise money without raising awareness/an understanding of the “why”. Our firm belief is that nearly no-one understands these powerful statistics: 1) 13 children a day are diagnosed with a brain tumor. 13 children will put their heads on their pillow tonight knowing their lives have been changed forever. 13 families who’s lives are changed forever. 2) only two new drugs have been specifically developed to treat a child with cancer in the last 20+ years, and that is not even specific to brain cancer. The treatments these children receive are painfully inadequate, ineffective. Here’s a powerful example. One of the chemotherapies Ross received to battle his brain tumor was developed in 1959 for breast cancer. Ross was nine-years-old, with a brain tumor. Not an adult. Didn’t have breast cancer. 3) Only 4% of the National Cancer Institute’s budget is directed to pediatric cancer research. Pediatric brain cancer research receives less than 1% of that 4%. This is why we fundraise. We cannot wait for this statistic to change.

How do you define “Leadership”? Can you explain what you mean or give an example?

Leadership is bravely, selfishly, and confidently setting a goal that’s higher than anyone feels it should be and then fearlessly pursuing it with everything you’ve got. It must be in concert with the mission of inspiring others to run in pursuit along with you. This is what I think makes leadership exciting and terrifying, but worth it. It means running with grit, on fumes.

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. The governance of a charity is an enormous task. It’s a full-time job in and of itself. I have a sales/marketing background. No legal or accounting. The amount of time it takes to manage these tasks is huge.
  2. Give yourself grace. As time clicks on, May 13, 2013 gets further in the rear view mirror for people but not for me. Every time I meet with a donor, business, speak to an audience it is about the foundation and the inspiring possibilities of what we can do together. But for me, it will forever begin with the loss of my little boy. It is always difficult to hold on to my emotions and go about the work of the charity.
  3. Write every single idea down. I actually do this by habit. And I am old-fashioned as I love a pencil and notebook. From the beginning I’ve had an orange 5×7 journal, a new one each year, that I write every single idea down in. Those 5 journals are an amazing history of what we have pulled from an idea into a deliverable!
  4. Seek collaborations. As much as I know this to be a good practice, the reality of this is slim and not easy. I am constantly looking for collaborative relationships in this work as I believe it will get us to the shared goal of saving children’s lives quicker than one charity can do alone.
  5. Cautiously explore the internet. I’ve sought learning about pediatric brain cancer from many sources: neuro-oncologists, neurosurgeons, nurses, scientists, and yes, the Internet. In nearly every instance that I have taken some information I’ve found to an expert, I’ve learned the incompleteness/inaccuracy of that source.

You are a person of enormous influence. 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. 🙂

I dream about every person at a sporting event- any sporting event (football, hockey, baseball, basketball, lacrosse, tennis, golf, track, etc.) donating $33. What we could do with those millions in research. AND… I also dream about getting 60 minutes at a round table with Bill and Melinda Gates, Oprah, Steven Spielberg, and Warren Buffet to tell them about our need to end pediatric brain cancer through research and asking them to financially make it happen! I’m not sure the latter is a movement, but I wanted to put in the plug!

Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?

My father has always said to me “You can do it. Now go get ‘em”. This quote hangs on my wall in my office. I have heard it ring in my ears every single time I have raised my hand to take on a task. It replaces courage with fear, and literally pushes me. I’ve said yes to so many things I wasn’t qualified for, including my current role. But I can say I have very few regrets to those “yeses”. I’ve not been 100% successful of course, but I’ve been vastly more successful than had I shied away.

Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂

Bill and Melinda Gates. They have a calling to devote their vast resources to improving lives of others and I believe they would add pediatric brain cancer should we have the opportunity to invite them into this work. I have always wished I could meet Billy Graham. I would love to hear his comforting voice, a voice of wisdom and honor.

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