Impact on Research


And maybe in about a year into the project, the request came whether or not they would be allowed to visit the lab. And they were interested in seeing sort of what’s being done in the lab and speaking also with the people who were involved. And so at the time, the group which was involved in this specific project was about seven people. And so we arranged for a visit, and so the whole family came, the girl herself, her brother and both parents. And that was very, to me, transformative, because all of a sudden you go from this academic discussion about cells with a mutation and they can grow in a petri dish, and something goes wrong, well, you know, no big deal, we can start again, to saying, here is a person, these are her cells. And everything we do in the lab has a direct impact on either her future, or her current wellbeing, or on the understanding of either her or her parents on the progression of the disease. And also on providing a diagnosis for this girl.

So I initially thought it was just me who was so affected by their visit. It turns out it was everybody in the group. It’s very unusual, especially in a molecular biology setting that you would have patients visiting, because typically we’d work with samples from anonymous donors, or it will be cells that is derived from people who were deceased a long time ago. So it was very, very transformative, and we realised that what we do in the lab has an immediate impact; although we are unable to necessarily find a cure, we can provide much better and a much higher level of understanding for the family. And it served both as a motivation for all of us. It was great to see the students, how they changed their view of how important their research, what they're doing, is. And also how you have to approach the setbacks a bit differently, because it’s no longer this academic discussion about XYZ. But also for myself, I realise that as a parent, the value of information that can be provided by the research team, goes beyond just understanding of the disease.

And so we then continued to stay in touch with Julie through the years and tried to sort of keep her abreast of some of the discoveries we made in the lab. But also – and this is what I started to appreciate more as we kind of progressed with the project – was to try to work on communicating to the other – the larger scientific community – how you can have a patient and patient partner focused research – academic research – and how it can be perhaps used as a model for others. And so between our clinical colleague, her sort of, and myself, we started to think of it a bit more globally, and so we’ve done some presentations. We’ll be doing another presentation this fall, really showing the story from three different perspectives. How does the patient see it, or the patient’s family in this case, how does the clinician see it and how does the basic researcher see it, and how we can each contribute to the development of the partnership itself. 

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