Bob Deyan, award-winning audiobook producer and man with a cause: fighting ALS. The list of accolades for titles produced by California-based Deyan Audio is long and includes every audiobook honor imaginable, including Audies, Grammy Awards, plus recognition from the Audio Publishers Association with this year’s Lifetime Achievement Award for Bob & Debra Deyan. For over 20 years, Bob has been dedicated to creating great audios, in partnership with his wife Debra. But the couple has turned their focus to making a positive impact in the world of ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease. I spoke with Debra to learn more about how she and Bob are voicing their cause.
Debra, you and Bob are so well-loved and respected in the audio production world. How have you involved the audiobook community in your cause?
Last week, we put up a Facebook page about Bob and his fight with ALS. We invited our personal friends from our own individual Facebook accounts to view it. During the first week over 10,000 people went to the site. We were dumbfounded and honored.
Please tell us about the path from diagnosis to your dedication to make a difference in the fight to find a cure and why have you chosen to go public with your involvement.
When Bob was diagnosed with ALS by the first of five neurologists who subsequently confirmed the diagnosis at the beginning of this year, we said what-what-what? What is ALS? What does that mean to us? What surgery, pill or cure is there and how fast can we do whatever Bob’s needs to do to get well? After all, every time Bob had something medically wrong with him in the past, there indeed was a pill or a surgery that fixed everything. We were surprised to learn that there was no cure. And, even more surprised that the specialists kept saying that 50 percent of their ALS patients died within the first year. Most of the others died by the end of year two!
However, one doctor at Cedars Sinai Hospital and one doctor at USC University Hospital said they each had a patient alive that was on their 6th year and another patient on their 10th year out of over 100 patients each. That gave us hope. The most disturbing thing we kept hearing from each doctor is how many ALS patients are taken advantage of by criminals. We were strongly warned that there IS NO CURE and anyone saying they could help us would most likely be a fraud. ALS organizations and ALS doctors have been working with the media and the FBI to stop this. There are 20/20 investigation type shows documenting the great lengths that criminals will go to extort money from terminally ill ALS patients.
So, armed with this knowledge, we began to look under every rock to see what is happening with ALS research and how we could be a part of a solution. It occurred to us that we had lived a very deep and fulfilling life in the heart of the Hollywood acting scene and linked to the amazing industry of publishing. Between these two highly influential circles there might be a way to bring voice to an illness that not everyone had heard of. We found that there are three upcoming stem cell research clinical trials to be held in the US this year. We found ALS.org was helping raise money for research, but they were also helping those who have ALS with practical advice and assistance. ALS.net (or ALS-TDI) was conducting pharmaceutical research. The MDA also had a branch that helped ALS patients. Steve Gleason the former NFL football player had an organization that raised awareness and funds to help ALS patients live an active life. And, there are others out there fighting the good fight against ALS.
Bob has chosen to go public with his involvement to fight ALS because he and I both feel a sense of responsibility to the patients that come behind us. The sooner we can find a cure, the more lives we can save.
How can other members of the audiobook community – listeners, fans, professionals – become involved and help?
We began to film a short documentary about Bob’s life to be posted on http://www.bobdeyan.com/ and on the Facebook & Twitter sites for ALS Bob. Our plan is to post the video by August 1st and to let everyone in our circle of actors and publishing know about it. Hopefully, the ones we touch will then pass it on to their circles, much in the way you are doing by putting something about Bob’s ALS fight in your blog.
We have begun putting together a group that will walk to raise awareness and funds for ALS.org in October. The walk will be in Exposition Park in LA.
We will put donation buttons on the http://www.bobdeyan.com/ website that will direct folks to donate to worthy ALS organizations like the ones I described above.
The medical community believes that there is a cure and that they can find it with the right funding. Most in the medical community believe that the cure is at least 5, if not 10 years and a billion dollars away. So, we have a lot of work to do ahead of us! I hope others do get involved in this fight along side of Bob, listeners and fans of audiobooks along with other professionals in publishing and acting. I think they can all help by making this disease widely known. Pass the information from Facebook page to Facebook page. Or re-tweeting to their own circles. Also, donating to worthy causes, or being part of a Walk to end ALS and donating their time while collecting funds from others.
We have been considering ways to expand our efforts and a benefit concert is just one possibility. We are open to any and all ways that can be thought of to spread the word and raise money for research.
Thank you much for inspiring me to take part on Team Deyan in the Walk to Defeat ALS – and to start a new focus here on Audiobooker to highlight how other members of the audiobook community are voicing a cause. And a special thanks for the inspiring story you’ve shared with us today. Much love to you and Bob.
Thanks for caring about Bob and his fight. He really is one of the bravest and loveliest people I have ever known. Even in our private moments he’s never been depressed or angry. Although he desperately wants to live and help in any way to find a cure, he tells me he is at peace with whatever happens. And, I think he is. His strength of character and resolve inspire me to keep it together and to do all I can to help him enjoy our family, friends and work while he is able. I love your idea to make a special feature for your fantastic blog called “Voicing a Cause”! There are so many worthy causes that need attention and social media is an amazing place to give voice to worthy causes and garner support.
Take a moment to watch the video below of Bob & Debra’s Lifetime Achievement Award presentation at the Audies Awards on May 30, 2013, one of the loveliest and most heartfelt events I’ve ever had the honor to attend.