Fundraiser planned for ‘Better Days: the ALS Documentary’
All are invited to attend “Better Days with Cathy Speck: An ALS Documentary Benefit,” featuring Cathy Speck, with an extended version of her inspirational, standing ovation 2014 TEDxUCDavis talk, and Nadine El Khoury, director, producer and writer of “Better Days: the ALS Documentary.”
The benefit takes place on Saturday, Jan. 31, 4-6:15 p.m. at the Davis Community Church Fellowship Hall, 421 D Street (look for bright yellow smiley face helium balloons to enter the hall.) Doors open at 3:45 p.m. The timing of the event is perfect since the Ice Bucket Challenge brought ALS out of the shadows — more people have actually heard about ALS.
Speck, a lifetime Davis resident, has told her story to college and junior high school classes, and at many ALS fundraisers and community benefits. She talks about her wonderful childhood devastated by the death of her mother from ALS, followed by her soul-searching adventures to become whole. Her story is one of inspiration, resilience, compassion and mindfulness, filled with love and lots of laughter.
Not only has ALS already taken the lives of three members of Speck’s immediate family, (her mother Dorothy in 1972, and brothers Larry in 2008 and Paul in 2011), but she also has ALS herself, which she suspected she had inherited while serving as Larry’s caregiver. Some members of the Speck family, including Cathy, inherited a rare type of genetic mutation, called Familial ALS, which is rare. Ninety percent of ALS cases are sporadic, meaning it can happen to anyone, anywhere, and there is no cure or successful treatment.
In July 2014, Speck was additionally diagnosed with metastatic neuroendocrine carcinoma (stage 4 cancer) and survived major surgery, but not all of the cancerous cells and nodes could be removed. Speck insists, “This isn’t all bad,” and adds, “Come on out, and I promise you will feel uplifted and energized before you leave. Money back guarantee — really.”
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their death.
When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. The usual prognosis is that people survive from two to five years upon diagnosis, though recently people are living to 10 years or longer.
While caregiving for a dear friend’s journey with ALS and learning more about the disease, El Khoury, a filmmaker from Lebanon, interviewed ALS researchers, as well as Americans with ALS and their families and caregivers. She felt compelled to publicly bring ALS out of the shadows and wanted to make a difference — not just for her friends but for anyone impacted by this fatal disease. She doesn’t have the funds to complete the “Better Days” documentary, which is the purpose of the Jan. 31 fundraiser.
Last spring, while looking for music to use in her film, El Khoury heard Speck’s voice on You Tube singing “Sweet Beyond,” an original song about loss and healing, and asked if she could use it in the documentary. At that time, she didn’t even know that Speck had ALS, and she asked Speck to send more Duval Speck songs.
The two met in person in Southern California a few weeks before Speck’s cancer surgery, and quickly became friends. Speck told El Khoury that she would do everything she could to help complete the film, and that is exactly what she’s doing.
At the Jan. 31 fundraiser, Speck will take the stage first, and after the intermission, El Khoury will talk about her passion and determination to create and produce this ALS documentary, and why she needs enough funding to complete it. After El Khoury’s presentation, Speck will perform “I’ll Fly Away” with Mary Lynn Tobin and Linda Duval on vocals, guitar and bazouki, as well as another Duval Speck song. (Linda and Cathy have not performed since Sept. 25, 2010.)
This event is recommended for ages 13 and up, due to some adult content.
Last summer Nadine released a brief interview/trailer for “Better Days: the ALS Documentary” on YouTube: https://m.youtube.com/watch?v=yBuNmwwhKi0b (“Cathy Speck:Don’t Wait For My Funeral”).
Those who can’t attend the fundraiser can support the documentary by sending a check prior to the event: Cathy Speck PO BOX 501 Davis, CA 95617. Make checks payable to Nadine El-Khoury. All donations will be greatly appreciated. Those who wish to attend the event can indicate are needed and note any handicap needs. All proceeds go directly to fund the completion of the film.
The suggested donation price for tickets are whatever amount the donor wishes to give, from $1 to $ 100 or more. Advance reservations are recommended, as seating is limited and tickets may not be available at the door. To reserve a seat or make a donation, go to http://www.gofundme.com/ddbn0k to donate, then click on “contact” near the bottom of the page to reserve seats.
To contact El Khoury, send an email to firstname.lastname@example.org.
Nadine El Khoury is an independent filmmaker living in Los Angeles. She has been editing and directing professionally for 10 years. Her projects include many charitable and humanitarian stories.
El Khoury directed and edited “Da Mariachi”, a short romantic comedy made for LACCD Board of Trustees campaign. “Da Mariachi” was a featured video in YouTube’s Film and Animation category, and has been nominated in the Monaco Charity Film Festival. El Khoury also directed and edited “Paleteros,” a silent short film about two rivals ice cream vendors fighting for the love of a girl they grew up with. “Paleteros” won the Silver Palm Award at the Mexico International Film Festival. In addition, El Khoury has edited feature documentaries for other directors that have won awards.
El Khoury is now in the post production phase of a feature documentary she has directed edited and produced, entitled “Better Days”, inspired by good friend Greg Bonfa, a PhD candidate in linguistics diagnosed with ALS (“Lou Gehrig’s Disease”). For five years, she followed the progression of four people with ALS at different phases of the illness along with a number of researchers, doctors across the country. El Khoury attempts to encapsulate the desperate hopes and struggles that plague this brave culture while waiting for a treatment.