Better Days - ALS Documentary
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.
PLEASE READ THE LATEST UPDATE!
With the help and loving dedication of ALS advocate Cathy Speck, the Davis community, and many others including personal friends, we did two fundraiser and two online campaigns in the past year and a half, that raised between online and offline donations about $14,000.
This money has been a big help. Even though we didn't reach our goal of $23,000 for Post production costs, we used the money you donated to pay for what was needed to finish. The way we did it is by replacing four powerful songs in the documentary by known bands, which had beyond our budget Sync licensing fees, with music by unsigned, yet highly gifted composers/performers (Mark Volpe, Linda Duval, Cathy Speck, Jesica Yap, and Merrill Collins). We also went with Royalty Free science animations (which aren't free at all but much more reasonably priced), vs. custom made ones. The choice wasn't easy to make but in the end we didn't compromise quality, we just had to search extremely long and hard for more affordable, yet quality animations and music. I can happily say that I'm very pleased and proud of the results.
Now that the documentary is all finished, it's time to submit it to festivals. This includes transferring the Project to a format that festivals accept. One last fundraiser is being organized as we speak by Cathy and her dear friend Angela onJuly 23rd in Long Beach for that purpose. I will show clips from "Better Days" and tell my story of what inspired me to make this documentary. Cathy Speck who is living with ALS and lost her mother and siblings to this disease, will tell her story. And Cindy Lopez who also lost her moms to ALS, will tell hers. So we'll show clips, tell stories, then sing and eat. Cathy will be sending the emails to friends who are local to Southern California. Hope to see you there.
Nadine El Khoury
Director, Editor, Producer
See you there and thank you for your support!
Here is the main song, Sweet Beyond, from the documentary in full from Duval Speck's first CD, I wrote it about 20 years after my mom died of ALS-it is very soothing and has true healing powers.. Click here please, and keep your arms and legs inside the plane at all times. http://www.youtube.com/watch?v=JK5mtKOF0QU Here is one of the trailers for Better Days