Today’s blog post is up at the Muscular Dystrophy Association site. You can read it here.
Category Archives: Research
I’m Not Done
May is ALS awareness month. I’m sure that anyone reading this post is more than aware of ALS at this point, but let’s keep talking about it anyway. Otherwise this might have to be a blog devoted to my love of tortilla chips. Happy Cinco de Mayo, by the way. And how about that Ted Cruz? No! Stop! This is an ALS blog. Puppies.
ALS TDI is running a campaign this month called #InThreeWords. They are asking people to come up with three words to explain how ALS makes them feel. I thought it was something that Scarlett and I would do together, but that didn’t work out as planned, and you can hear why by watching this 1-minute video I made to share my three words. It’s G rated. Read More>
Movie Making
The story starts with Kevin Swan. I had known Kevin for some time when he wrote and suggested that we make a video about my life with ALS for his A Life Story Foundation. He had done other profiles, and different ALS-related videos that I’d seen, and I knew that he was very good. So of course I said yes, even though in the back of my mind I was thinking, I’m pretty sure I will be terrible at this.
My friend Sam is a documentary filmmaker and he’s told me that having a camera aimed at you is not as scary as it sounds and that you get used to it pretty quickly. Still, I assumed that I would be some kind of extra special awkward case, and would just be bright red and fumbly the whole time.
Note: we are rarely as special, particularly in the bad ways, as we think we are.
The plan proceeded, and I was excited. Months went by, and then Kevin said that he found a production crew in San Francisco who was willing to do the work. Suddenly, any nervousness that I had was offset by my intense desire to tell our story, and to spread awareness of ALS, and to have my life–and countless others–dramatically saved in a flurry of fundraising and scientific wizardry. Read More>