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Reflections on My First Two Years at the Children’s Tumor Foundation

By February 27, 2014December 5th, 2023Awareness, Publications

The following is from Children’s Tumor Foundation Communications Director Simon Vukelj:

Two years ago today, I started working for the Children’s Tumor Foundation. Prior to interviewing, I had never heard of neurofibromatosis, and I was pretty sure I didn’t know anyone who had NF. Though I would soon learn that statistically, at 1 in 3,000, it was almost a certainty that I had met someone with NF, and just not known it.

In a previous career, I had worked for the American Heart Association — we all know someone with heart disease, right? — and in my previous role in corporate philanthropy, at Pepsi, I had approved many a funding request for well-known charities related to pink ribbons or yellow wristbands, among many other important causes.

But I couldn’t recall having had a connection to NF. And that ended up being one of the primary reasons I took this job. To help raise awareness about this mysterious, difficult to understand disease that affects so many. “The most common rare disease most people have never heard of,” I’ve heard many say about NF — both as a matter of fact, and as a point of frustration.

Two years later, and I’ve of course met many people living with NF. I’ve shared in the triumphs of the news of a clean MRI (no news is hopefully good news), as well as the emotions of family members waiting for their loved one’s 3rd or 4th or 5th surgery. At NF Forum, our annual patient symposium, I’ve goofed around with NF kids in the lobby of the hotel (yes I’m still a big kid), and have eaten chocolate covered insects with them because, well, they dared me to (can’t turn down a dare).

But then moments later I’ll walk into the conference room at the Forum, full of hopeful parents listening to scientists about “What’s new in NF,” and what’s still yet to come. Scientists using big words and images of tough-to-follow cell drawings. And you won’t hear a pin drop, every eye drawn to the presentation screen. During those moments, there is nothing more important than those formulas and charts on the conference room screen, because they may lead to clinical trials and effective treatments, which will impact those kids running around outside that room. And the adults living with NF who are in it.

As I reflect on all this, and look around at that room, I think about a common refrain in our community: “NF patients, NF families are a tough group. They go through a lot, perhaps more than most. And it’s compounded by the knowledge that there is not yet a cure.”

That is so true.

What also comes to mind for me during those moments is a quote I find myself thinking about whenever I hear of a story of struggle. It’s from Winston Churchill, given to the British people during a very low moment in World War II:

“Never, never, never give up.”

So simple, yet so powerful. Churchill found a way to capture the moment. He knew his people – resilient and tenacious – and he knew they would do whatever it takes to win.

And so when I newly meet an NF Hero, or talk to a frustrated parent on the phone, or follow along online of news of someone’s surgery, or just hug someone at NF Forum or at any of our events, that quote is in my head: never, never, never give up.

That’s what our NF community is about. We never give up.

And that’s what the Children’s Tumor Foundation is about. It infuses the work we do every day – all of us, the Foundation staff, volunteers, and participants. It’s inspired by the people we meet every day. The people I referred to above – NF patients, NF families, NF doctors, NF researchers.

We’re also especially inspired, and sometimes amazed, by those without NF who have come to this cause. I was reminded of this again at the recent Racing4Research event in Daytona. The drivers and pit crews, who have no connection to NF, are basically at work, getting ready for the race. But when an NF Hero walks by, they stop what they are doing, and nothing is more important in those moments than the NF cause. Sure, they want to win their race, but they want us to win our race even more.

And that same spirit is embodied within all of our Foundation programs. People running, biking, and swimming, on behalf of NF (NF Endurance). People racing cars at incredible speeds, literally putting themselves at risk, for NF (Racing4Research). People getting up early on a weekend, putting their lives aside for the day, and raising awareness of NF with their communities (NF Walk). And of course those bold, slightly crazy people who run outside in their underwear (Cupid’s Undie Run). Yes, for NF.

And so many thousands of others who give and participate and make it happen in so many different ways, all for NF.

Two years ago, I didn’t know NF. Today, this is what I’ve learned:

NF patients: they live it every day … we need to find a cure.
NF families: they feel it every day … we need to find a cure.
NF doctors: they see it every day … we need to find a cure.
NF scientists: they work on it every day … we need to find a cure.

We need to find a cure. And fast.

At the Children’s Tumor Foundation, I’m the communications guy. My job is to share our stories of NF – the personal challenges, the scientific advancements, and the glorious victories – in a way that gets the world to pay attention. That’s why you see “End NF” in everything we do. Because that’s our mission, and that’s our calling. And it’s the reason we’ll succeed, because we promise– we will never, never, never give up