Lessons From Nicola, Founder of the Follicular Lymphoma Foundation

In mid-November 2019, the blood cancer community saw the launch of the Follicular Lymphoma Foundation. There are lots of organizations that help raise money for blood cancer research. But this is the first foundation devoted only to follicular lymphoma. Its main goal is to find a cure for FL.

Of course, as someone who has lived with follicular lymphoma for 12 years, I am very excited about this. All credit for this effort goes to Nicola Mendelsohn, who created the foundation. She is Facebook’s Vice President for Europe, the Middle East, and Africa, and has used her position to make a difference for FL patients. She was diagnosed with follicular lymphoma in 2016. Like many of us, she didn’t have any symptoms except a persistent swollen lymph node. She was able to do some watchful waiting for a year, and then had treatment.

A shared follicular lymphoma experience

It’s a story that’s very familiar to me. Like Nicola, when I was diagnosed, I was living a healthy life. Like Nicola, I was married with kids. Like Nicola, after I was diagnosed, I watched and waited and tried to live as “normal” a life as I could, as someone with cancer who made the choice to hold off treatment until absolutely necessary.

And like Nicola, I went online and found a community that could answer my questions and support me emotionally. (There are lots of them out there, including Blood-Cancer.com.)

On the day of the Follicular Lymphoma Foundation’s launch, Nicola Mendelsohn appeared on TV, and magazines published interviews with her. Twitter was abuzz. It was inspiring to see so many people suddenly becoming aware of follicular lymphoma.

Increased awareness of follicular lymphoma

Of all the interviews, Facebook posts, and tweets, there was one that stuck with me, and not necessarily in a good way. It was from a magazine article. I won’t say which one, because I know it was meant to be supportive of the Foundation and the patients it will help.

The article called follicular lymphoma a cancer that “wrecks lives, renders those living with it powerless” and was “previously believed too rare to be worthy of a cure.”

It was the word “powerless” that stuck with me.

We are anything but powerless

I understand the idea. All cancers can do those bad things, upending our lives and making us feel powerless.

But if anyone has shown us that we aren’t powerless in the face of a cancer diagnosis, it’s Nicola Mendelsohn.

After her diagnosis, she went back to work. Life with follicular lymphoma can be like that sometimes. We don’t have symptoms right away. But it’s an emotional disease as much as a physical one, and we live with the knowledge that it’s incurable, and that can be overwhelming.

There's always something we can do

But she went back to work. A small, every day act. But one that showed she was certainly not powerless.

And then she gave interviews and told her story. She gave some inspiration to others with cancer.

And then she started a foundation. She’s working to raise money to support FL patients and help find a cure. That’s not powerless, either.

Nicola Mendelsohn is a hero. Not just because she’s raising money, but because she serves as a great reminder for all of us with blood cancer:

We’re not powerless. There’s always something we can do.