I wanted to share some other HIBM faces on our Bike for Kam website. I don't have a real camera or professional editing skills but wanted to share other stories like mine in whatever capacity I could. The project isn't just about me. My friends and I started it, but it's meant to be about HIBM. I shot this video with my iphone and invited other patients to submit clips of themselves in whatever form they were emotionally or personally comfortable with.
The main characters are Dr. Daniel Darvish and Dr Babak Darvish, Founders of ARM and HRG, HIBM molecular laboratory. They are HIBM patients and even if I didn't know them, I would think they have an important story. I hope it gets told one day. The Darvishes were the first patients I had ever met and we have been together ever since. When I was filming this, and in between takes, they recalled how many years we have been together and couldn't believe that it's been almost six years. In which I replied, "wow, it's been so fun..." in a semi sarcastic, yet playful manner.
They're not just research scientists, founders of organizations, but they are HIBM patients. It's important to see that first. They've become more than that, but my friends too. I've seen some of their most intimate moments but despite their struggles, they still proceed. They may never benefit from their life's work to the extent that newly diagnosed patient may. And, they know that. So, I have to respect and admire that. It's hard seeing a friend struggle. In those moments to know intimately EXACTLY how, when and why they struggle. I guess I want others to see what I see. In no way are they perfect, but they're human.
I compiled some other patient clips that were sent to me in video form and uploaded to our BikeforKam site. Get to know them, too. Meet other HIBM patients