Some of you may recall that a couple weeks back, I made my emcee debut at a fundraiser titled “Better Days with Cathy Speck — an ALS Documentary Benefit,” held at the Davis Community Church on Jan. 31. All in all, I didn’t suck nearly as bad as I imagined.
Cathy, of course, was her usual Ms. Wily Scamp self, and in addition to hearing her heartbreaking recount of how ALS affected her life as a child and then later when she developed symptoms herself, the crowd was also treated to a truly lovely rendition of The Youngbloods’ classic “Get Together” via a rare return to the stage of Duval Speck, with Cathy’s songstress partner Linda Duval. Wow, what lovely voices.
The crowd also had the chance to meet the producer of “Better Days,” Nadine El Khoury, who is simply delightful and so very dedicated to this project. Part of my emcee job was to do a “Between Two Ferns”-esque interview with Nadine, and her passion and devotion to raising awareness about ALS was palpable.
A real highlight of the evening was seeing clips from the documentary, which follows four ALS patients over the course of five years. Nadine’s interest in ALS was sparked when a college friend of hers developed the disease, and she could scarcely believe what havoc it wreaked upon him. Formerly a filmmaker of social documentaries in her native Lebanon, she turned her talents to ALS.
Besides video of her friend, Nadine selected some truly amazing people to follow. One man had suddenly developed ALS mid-life, without warning (which is how this monster attacks — out of the blue) and Nadine followed how he and his wife were coping with all the subsequent changes and accommodations.
Then there was the woman who’d lost all ability to move her tongue (Cathy suggested to the audience to try and say your own name without moving your tongue to see what it’s like when ALS takes your ability to speak — it’s almost impossible), and showed her young daughter at her side who had learned to translate her mother’s sounds and intonations into words, and serve as her voice.
The story that really struck me was a man with ALS, who would tell his daughter what to paint on a canvas as she stood by their easel. She became his hands. Together, they made gorgeous paintings, determined to find a way to bring beauty and value to this man’s life despite this dread disease slowly eroding his ability to control his body.
Cathy herself is not in the film, as Nadine was already nearly done with the documentary when she met Cathy. However, she did film a wonderful little side-video of Cathy called “Don’t Wait for my Funeral,” a bittersweet reminder to show your love for people while they’re still alive. This video featured Cathy’s bittersweet song, “Sweet Beyond,” which she wrote after her mother died. This song just reaches in and grabs you by the heart, and that is how Cathy and Nadine met — Nadine heard the song on YouTube and thought it would be the perfect soundtrack for her movie … not even realizing that Cathy is also an ALS patient. Talk about synchronicity!
Nadine’s documentary promises to be amazing, and includes interviews with medical professionals regarding the latest research on ALS. It’s a documentary everyone should see, and in order for that to be possible, Nadine still needs a financial boost. She explained to the audience that she has already invested $66,000 into the documentary, which is now finished and in the editing stage. All she needed was $23,000 more — so close … so very close.
At the Jan. 31 fundraiser, the Davis community, as well as a few folks from Winters and elsewhere, really stepped up. Cathy reports that a total of $4,400 was raised that night, and Nadine has since raised $2,000 more. All she needs is $16,600 more to finish the documentary. As I said at the event, “$16,600! That’s nothing! We can do this!”
Valentine’s Day being this weekend, I’m asking everyone who reads this to send a “valentine” to Nadine, and ultimately all ALS patients. I’ve already known three people who died far too young from this disease, and I don’t want Cathy to be the fourth. I keep rooting for the big breakthrough. By helping to fund this documentary, by raising awareness, by in turn raising donations for research, we could all help crush ALS once and for all.
Google “Don’t Wait for My Funeral.” Google “Better Days” on You Tube. Check out the Better Days Facebook page: www.facebook.com/betteralsdays. Go to http://betterdaysfilm.com and donate by clicking on the GoFundMe picture. How easy is that? It took you longer to read this column than it will to help support a great cause that in turn, will help support an even greater cause: finding the cure for ALS.
Just a little love, just a little push… your dollar might be the one that puts “Better Days” over the top. Maybe you’ll donate because you’d like to see that happen. Maybe you’ll donate a dollar for each one of your loved ones — a cosmic “thank you” that none of them ever get ALS. Maybe you’ll donate what you can just because I’m asking you pretty, pretty please with sugar on top to help get “Better Days” finished. Whatever your motivation, every dollar is one step toward the finish line.
How about we all make this film happen, and then have a fantastic public screening of the documentary? Donate $10, and I will return to emcee it! Donate $20 and I will stay off the stage! Just please donate. You don’t want to watch someone die of ALS. I know I don’t. Particularly not Ms. Wily Scamp. I’d kind of like to keep her around. And, if you love someone with ALS, I bet you feel the same.
It’s Valentine’s Day weekend. Could you show a little love?
— Email Debra DeAngelo at email@example.com; read more of her work at www.wintersexpress.com and www.ipinionsyndicate.com