A parent helped to secure funding for Martin’s project and is contributing to publications about the partnership

Transcript

Certainly for funding. It was Julie’s [patients’ mother] fundraising efforts which helped to secure funds to push the project forward. It was through MitoCanada, and so it was very – it was something which, again, we would not have necessarily anticipated that the family would be so much engaged in fundraising efforts to keep pushing the project forward. We are hoping to be able to communicate this story again in a written format in more patient-oriented publications, in particular – so this is a rare genetic disorder, so there are publications which are specifically aimed at rare patients, so that would be a great avenue to put the story forward. 

It’s interesting, I mean, one of the issues we have is, we speak a completely different language, and how do you bring it to there? So our approach to that, let’s engage a journalist and perhaps a journalism student, and so then they can be yet another party which can benefit from this story. And so we’re working towards that right now. 

Interviewer: Exactly how is the journalist helping?

At this point we have strictly the discussion, how do we go about it? I’ve engaged my colleagues from the School of Journalism, and they’re trying to identify a student who would be a right match for this. And the idea would be, we would – almost as if doing self-interviews, kind of like what we are doing right now – but also, this person gets perhaps more technical information about the function of the normal gene, perhaps what the mutation – as far as we know, what the mutation is doing and how it becomes dysfunctional and what impact it has on the phenotype of disease.

And perhaps matching that with some of the experiences the family had, and so doing it almost as a sort of two voices speaking about the same thing as much as we can. So we’ll see how it goes, because it’s challenging, because these two works are so very different.

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