All are welcome to a free special screening of the ALS documentary ”Better Days” on Sunday, Dec 6th from 1:15 to 3:30pm at DCC Fellowship Hall, 421 D Street in Davis. The event, officially called “Better Days- A Special Community Screening in Honor of Cathy Speck ,” is free and appropriate for all ages, although issues about dying can be intense.
“Better Days,” was produced, written and directed by an independent filmmaker originally from Lebanon, Nadine El Khoury. She says that “The documentary puts you inside the lives of four remarkable individuals who refuse to surrender to Lou Gehrig’s disease. I had never heard of ALS until my dear friend was diagnosed with it. Watching him deteriorate from ALS was worse than living in war torn Lebanon for fourteen years.”
“Better Days” is ithe closest look yet taken at the whole ALS community, from science to faith. Families, caregivers, celebrities and healers help form a perspective that collapses five years of slow degeneration into moments of human spirit. This is a documentary that will make you love four strangers and want to help find a cure for ALS , as well as help maintain quality of life for PALS ( Person with ALS ) and CALS
( Caregiver for ALS .)
In the Spring of 2014 , after El Khoury was finished with the film footage, she needed to find music to accent the emotions of the documentary, so she started searching on You Tube. This is where Cathy Speck enters the story. El Khoury heard Speck singing the Duval Speck song “Sweet Beyond” with lyrics written by Speck about what she imagined her Mom would’ve said to comfort her after she died . Speck had just turned 13 when her mom died of ALS the heartbreaking age of 52. Other Duval Speck songs are also featured in the documentary.
It’s a remarkable story that El Khoury had no knowledge of Speck or her family’s history. When the two met in person in Long Beach in June of 2014, they quickly became dear friends and Speck felt completely compelled to raise money and help El Khoury finish her project and to make her dream come true.
El Khoury explains, “After I met Cathy I felt a new momentum to finish the documentary – she brought beautiful energy and support from her community. The last leg of the journey happened because of Cathy and if she hadn’t given me all that support it would’ve taken much longer to finish. It took me seven years to complete “Better Days” and I am so excited to share it with the Davis community.”
ALS a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. The progressive degeneration of the motor neurons in ALS eventually leads to their death. The usual prognosis is between two and five years upon diagnosis, though more recently people are living to 10 years or longer.
Currently there is no treatment or cure for ALS.
Ninety percent of ALS cases are sporadic, meaning it can happen to anyone, anywhere, however, 2% of ALS cases are caused by a SOD1 genetic mutation, in the Speck family’s case, the genetic mutation came from the maternal lineage. Other members of the immediate Speck family have died from ALS : brothers Larry 2008 and Paul 2011, “and I ain’t dead yet, ” confirms Speck. All of Dorothy Speck’s children have/ had a 50/50 chance of inheriting the genetic mutation that leads to ALS.
To kick off the event Duval Speck ( Linda Duval and Cathy Speck ) will lead the audience in two sing-along songs “to help people feel more connected with each other. This is horrific disease, but together we can turn it into a beautiful love story. We are one.” says Speck.