Parents, Patients, and Researchers Unite: A Powerful Day in Cambridge
- Post by: fantom
- 20 August 2025
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On Friday 27th of June, we held the first meeting of the Childhood, Teenage and Young Adult Anaplastic Large Cell Lymphoma Patient and Public Involvement and Engagement group (CTYA ALCL PPIE) in Cambridge, where scientists from our lab spent the day with five parents of children with a very rare immune cell cancer called ALK-positive ALCL, and connected via videoconference with two sets of patients and their parents. From as far as Canada and as close as Oxford, they each brought their unique lived experience with this disease.
From the moment we each introduced ourselves first thing in the morning, I was struck by how engaged and informed all participants were. We discussed what we know about cancer, how and why it happens. We spoke about the latest research on targeted therapies and mechanisms of drug resistance in ALK-positive ALCL. We also heard from other Cambridge-based patient advocates about their experience in PPIE.
I felt incredibly privileged to spend the day with these parents. When each mum and patient shared their story, it was very emotional, but they showed so much resilience, strength and compassion. Fundamentally, we all want the same things. To make a difference, contribute to research and help those affected by ALK-positive ALCL. Therefore, it was important to finish our meeting aligning on what the biggest challenges are in our field, and come together to reduce the disconnect from bench to bedside.
This moving experience will stay with me, driving me to stay focused through setbacks in the lab (which have been put into perspective!) and, I hope, long after my PhD.