Driven by Experience: How a Caregiver Became an MPN Advocate

An advocate’s personal connection to cancer has shaped his approach to providing support to patients with myeloproliferative neoplasms (MPNs).

Richard Winneker, a patient advocate for the MPN Research Foundation, recalled his time as a caregiver to his son who had acute lymphoblastic leukemia as a child. He said that this experience has shaped his approach to research and the understanding of cancer’s impact on patients and families.

CURE sat down with Winneker to learn about how his caregiver experience has formed how he advocates for patients with MPNs through research and beyond. For example, he recalls a pivotal moment in his work with the MPN Research Foundation, for which he helped with a patient-focused drug development meeting.

Transcript:

I'll start back with the fact that I had a son — I have a son who had acute lymphoblastic leukemia, so I brought the caregiver experience. I think just saying that word when your child has a cancer probably isn't enough to explain how traumatic it can be, and I've carried that with me through my entire research life.

But I would say the greatest impact that I've experienced during my time at the MPN Research Foundation was when we held, in 2019, an externally led, patient-focused drug development meeting. And that was a meeting where we brought together patients to really talk to representatives of the FDA and pharmaceutical companies about the burden of their disease, what their — what their concerns were and it really opened my eyes to — to how heterogeneous and how difficulty it can be living with these diseases.

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