Blog

By Peter Yanefski – Communication and Operations Coordinator

When I first started at the Histiocytosis Association in 2022 I only really met with our founder Jeff Toughill by phone or video call in my first 3 months. Past that, we had very few solo interactions, and I saw him in person only a few times since then. Back then, he still joined us occasionally on our weekly kickoff meeting. He’d be sitting there on his recliner, and you could hear his grandkids in the background. He was officially retired at this point, but he still loved to hear what was going on at the Association. He was living in his legacy. 

For my part, I had already taken in the onboarding material, a lot of which was the history of this disease and of the organization. To me, he was already a legend with all he had established. On top of that, he had mentored our director at the time, Deanna Fournier, and my direct supervisor, Kristen Nesensohn. Both of whom had gone on to become the first real mentors of my career. I was the student of his students.

I would call him directly for his institutional memory, and get so much more. I’d receive his humor, his massive knowledge of histio and his advice for pitfalls to avoid as I got up to speed. I would even hear about his love of the town I’ve now called my home for the past decade, Pitman. 

After those first few months, in order to allow our new leader and us to fly, Jeff no longer joined our calls, and we spoke much less often by phone. I largely took over what interaction he still had with the community in managing the Community Forum on Facebook. From then on, I was simply living in his legacy. 

Everything that I worked on had his mark, even if it was something established after he retired. The people who work at the Association, especially those who worked under him for many years, show the same professional joy that he did. 

More than the groundwork he did at the kitchen table, more than the phone calls he took from every parent and patient,and more than the team he built over the years. He built a way of working and it was joyful. And why not? He succeeded at one of his main goals. It’s what we still have on our website, brochures, and what we say in most of our new patient phone calls, reminding people that “You Are Not Alone.” That is a huge reason for joy. For patients, families and even for us as staff. 

One of my favorite lines from the Broadway musical Hamilton is “What is a legacy?” A question Alexander Hamilton asks in the last few moments of his life. His answer is: “planting seeds in a garden you never get to see.” And as much as I love that line. It’s untrue in this case. Jeff did get to see that garden, he planted those seeds, he cultivated it and he got to see how high it grew by the end of his life. Now, his garden surrounds us as we work, and it quite literally surrounds us every September when we put out a histio garden, of ribbons, labeled for those warriors we lost or ones who are still with us, because of the work that Jeff started when he planted the seeds.

Some day, maybe some day soon, a new employee will start at the association who has never, and now sadly will never, meet Jeff. But they will know him, in the work that they do, in the building donated in his name by a histio family, in all the times they repeat what he said to multitudes of families: “You Are Not Alone”. They will live in his legacy too. 

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If you’d like to hear more about his legacy, you can read his obituary and see the webpage we’ve made showing all the memories of him the community has shared over the past week.