The two Gregs were first to believe and to participate in "Better Days". Then came Danielle and Gerard, then so many others that included family members and caregivers. A beautiful long journey was forged. Along the way came many brave people fighting ALS who I connected to in ways that make life worth living. We laughed and cried many times over great stories and events. As I filmed I saw their anger and frustration as they struggled with everything, and I felt their pain as they lost more and more function. But they live with a fatal illness that has no treatment and stay hopeful until the end.
It is a beautiful tragedy. Beautiful because people with ALS are admirable. They don't see themselves as pitiable; they keep on living with dignity, spreading love, humor and wisdom. Cathy Speck, who I met recently after hearing her music on YouTube, is another example of someone living with ALS who always shines so brightly and is on a mission to spread love and let people know about what it is to live while dying of a killer disease. Her happy positive outlook on life is the best buzz. Yet it's a tragedy because as of today ALS is still a death sentence.
The ALS Ice Bucket Challenge is the best thing to happen to ALS since it was first identified as Lou Gehrig's disease in the US in 1939 after the Baseball player who only lived 2 years after his diagnosis. Nothing has changed since then, 70% diagnosed with ALS still die between 1 to 5 years after diagnosis. But this challenge has brought ALS out of the closet finally! And is bringing the much needed funding for research as scientists are still understanding the biology of this disease.
Since scientists still don't know what causes ALS, there are numerous theories. Gene therapy and stem cell therapy are the tip of the iceberg. To get this far, understanding the cell biology and pathology of this disease is mind-boggling. Besides the 4 biology courses I took in college before deciding against pre-med, I don't have a biology or neuroscience background. So I had to read lots of scientific papers given to me by some of the scientists I interviewed and had to brush up on basic biology and genetics. I had to read at least 200 papers and understand the terminology. Phew, it was good for my brain. I have had lots of support from various people along the way with one constant, Mark Volpe, always offering immeasurable creative and tech support.
It's been 7 years and a much more involved project than I originally thought it would be, but I will not stop till it's done. And now I need your help with finishing funds.
"Better Days tells the real ALS story in a very touching way and presents the latest science behind ALS in a clear fashion.
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