• ALS documentary, ‘Better Days,’ is completed

    All are welcome to a free special screening of the ALS documentary “Better Days” on Sunday, Dec. 6, 1:15-3:30 p.m. 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.

    “The documentary puts you inside the lives of four remarkable individuals who refuse to surrender to Lou Gehrig’s disease,” explains El Khoury. “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 14 years.”

    “Better Days” is the 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),” says Speck, who has been living with ALS for several years and is a constant proponent for finding a cure.

    “And I ain’t dead yet, ” she confirms.

    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 Speck entered the story. El Khoury heard Speck singing the Duval Speck song, “Sweet Beyond,” with lyrics written by Speck about what she imagined her mother would have said to comfort her after she died. Speck had just turned 13 when her mother died of ALS at the age of 52. Other Duval Speck songs are also featured in the documentary.

    Remarkably, El Khoury had no knowledge of Speck or her family’s history with ALS. When the two met in person in Long Beach in June 2014, they quickly became friends and Speck felt compelled to raise money to help El Khoury finish her project and to make her dream come true.

    “After I met Cathy I felt a new momentum to finish the documentary,” says El Khoury. “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.”

    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,” says Speck.

    “This is a horrific disease, but together we can turn it into a beautiful love story,” says Speck. “We are one.”

    After the screening, there will be time for questions and comments. Also, Jennifer McErlain, a representative from ALS TDI (Therapeutic Development Institute), will have a table with informative pamphlets and other ALS resource materials.

    Free homemade popcorn made with organic extra virgin olive with and without garlic powder will be offered and all are invited to bring their own beverages, but no alcohol.

    El Khoury and Speck are expressing their gratitude for the monetary and personal support they received from the staff and congregation of The Davis Community Church by offering the film screening for free.

    To find out more about the effort to make “Better Days” a reality, visit http://www.huffingtonpost.com/jennifer-wolfe/help-her-live-better-days_b_6823234.html, a blog by Davis writer Jennifer Mason Wolfe, and a column by iPinion Syndicate co-founder Debra DeAngelo at http://ipinionsyndicate.com/could-you-show-a-little-love-for-better-days/

     

    About ALS

    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, two percent 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. All of Dorothy Speck’s children have/ had a 50/50 chance of inheriting the genetic mutation that leads to ALS.

    For more information about ALS, visit www.als.net.

     

     



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