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An update on RARE

Regular readers know about the documentary “RARE.” For several years a film crew from the University of Stanford Medical School’s Bioethics department followed us through our drug trial for Pirfenidone.

We were hoping that the documentary would be accepted into the Hampton Film Festival. Unfortunately, we learned this week it didn’t get in.

How is that possible! Okay, I know I’m bias – but every time I’ve watched the film with others, they’ve been very moved. There’s also the fact that I’m so anxious to get the film, “out there.” I want to use it for fundraising and outreach.

Still, I do believe that God does things in his timing. The truth is the weekend of the Hampton Film Festival couldn’t have been worse for us. Not only do we have one of our largest fundraisers happening that weekend, but we have an outreach at the American Academy of Pediatrics. Our attention would have been divided.

So, perhaps it wasn’t meant to be. Another festival at another time would allow us to devote our full attention to the event and make the most of it.

God knows what he’s doing. I’m just very impatient!


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