Everybody has a cause. Even ignorant, mani-pedied, bleach-blonde, 20-something, everything handed to them on a silver platter, light on talent – heavy on boobs and photogenic facial symmetry, no worries in the world, don’t really have to do anything but show up on set – say stupid ass lines with sincerity – get massage after wrap – go to the beach and contemplate which Jonas brother is the deepest thinker actresses, will eventually find a cause in which to completely wrap themselves. Before you know it VH1 is running the “save the Homecoming Queen’s self esteem” benefit concert, complete with tears from Lindsey Lohan, an emotionally stirring version of “People Get Ready, There’s A Train A’ Comin’” from John Mayer, and an off-the-cuff comedy bit by Jack Black and Ben Stiller that leaves us all feeling warm and fuzzy and actually contemplating a contribution to the stupid cause we know nothing about and are still wondering why, if it’s SO INCREDIBLY IMPORTANT, all the Hollywood A-Listers don’t just quietly throw in a couple of million a piece and solve the problem, rather than having Matt Damon walk out and guilt us all into a ten dollar pledge …when we could really use that ten dollars …especially these days. I get it and I’m as fed up as anyone with pet causes. When I see celebs looking straight at me in a camera – telling me why I’m a second-rate person for not knowing that the East Chilean Spider Monkey is on the verge of extinction and I haven’t done more to stop it – I eat another hand full of popcorn, audibly say “whatever” back to the TV, and finish the game without a second thought. I can get a snoot full of causes pretty quickly. I’m sure you can too.
Still, in all of us is a desire to leave the planet better than we found it. Everyone wants to find importance in their lives. If you’re maturing and growing as a person, you discover that there really are matters of consequence in the world and you might find yourself trying to help in some way. My cause was forced upon me 7 years ago in the form of a Chinese baby named Isabella. Even as I write this, I’m taking a break from writing the book that chronicles her adoption and the heart-breaking years that followed. Nothing mobilizes you like your kids. Two years ago, after what felt like a lifetime of sleep deprivation and surreal care-giving, Yolanda and I finally got a diagnosis for Isabella of “Angelman Syndrome” as the cause of our daughter’s seizures, sleep disorders, total lack of speech, profound motor skill delays and cognitive impairments. From the moment of our diagnosis, “Angelman Syndrome” was officially my pet cause.
Angelman Syndrome is an incredibly rare genetic disorder that affects all races and genders. It is hardly known, even to most well read doctors. So far in the U.S. alone, we have only found around fifteen hundred families that know they have “Angels” (as we call them), even though the statistics tell us there should be 5 to 10 times that number. Needless to say, lots of kids are not getting diagnosed correctly. Because Angelman Syndrome is so rare, there will never be that much NIH (National Institute of Health) research money for it – no matter who’s running the country. It just isn’t on par with cancer, heart disease, AIDS or Alzheimer’s, in it’s general population reach. For me, however, there is a prevailing reason to bang the Angelman Syndrome drum and draw lots of attention to it. Angelman Syndrome is often mis-diagnosed as Autism. In fact, my daughter was diagnosed with Autism three years before her CORRECT diagnosis. Autism has become a catch-all for everything doctors can’t figure out and it has become an epidemic. One in 94 boys born in the U.S. alone are diagnosed with Autism. Folks, that’s frightening. This country is staring down the barrel of a significantly mentally challenged population in the next 25 years if we don’t get a handle on this stuff. Do I believe it’s environmental? Maybe. Do I believe the mercury in vaccines theory? I certainly don’t believe we should rule it out just because the CDC says we should – they’ve been wrong before. Do I believe there’s a genetic component? I personally know of one diagnosis that WAS a genetic disorder and NOT Autism …my Isabella. If it happened to us, how may more people in the world are being mis-diagnosed? What impact would correct diagnoses make on the world of mental health? It could be life changing on a global scale.
One thing I’ve learned over the years with medical problems is, half the battle is the correct data. My focus in the Angelman Syndrome awareness campaign is to get people the correct data. If there were a cure for Angelman Syndrome today, most doctors wouldn’t even know how to diagnose the disorder in the first place and the cure wouldn’t matter. It is a fact that we have lost “Angels” in the past because their treatment was all wrong for someone in their condition. My daughter received horrible medications for someone with Angelman Syndrome, simply because all the pointy-headed specialists didn’t know what in the world she had. The fact is, correctly diagnosing someone with Angelman Syndrome could be a matter of life or death. Once you factor in the many incorrect “Autism” diagnoses occurring every year, world-wide, Angelman Syndrome isn’t such a small problem after all. It might be bigger than we know. Angelman Syndrome is flanked by conditions known as “Fragile X” and “Prader Willi” Syndrome. There are also myriads of certain genetic mutations that occur in people that take on the characteristics of everything from severe Autism to Cerebral Palsy. The world of special needs is vast and daunting in it’s scope. I deal with it every hour of every day of my life as do many others. It’s real and perpetual and if it hasn’t affected you or someone you know yet …it will. The probability is simply too high – the math will find you soon enough.
So, about a year and a half ago, some other AS parents contacted me about being on the board of a new and exciting foundation. The FAST (Foundation for Angelman Syndrome Therapeutics) foundation. I agreed. We had learned of a scientist who’d cured the disorder in a mouse several years ago, so we contacted him (as well as every other doctor or scientist we could find who studies AS) and put together a foundation to raise the money needed to further the research. We wanted our foundation to be aggressive, forward thinking and positively maniacal about Angelman Syndrome awareness. FAST is dedicated to the most high tech information – the newest and most innovative ideas for Angelman children and the day to day lives of their families, to the actual search for a cure. FAST is dedicated to the highest possible profile, in hopes that we can make Angelman Syndrome a household word. That’s the only way to insure that doctors factor it into diagnosing mystery symptoms from here on. That in itself, has implications in the larger worlds of Autism, Cerebral Palsy and a host of other severe genetic and neurological disorders.
So, there’s the Matt Damon PSA – here’s the fun part. The research money needed to test several promising and potential cures or “therapeutics” for Angelman Syndrome, is in the several millions of dollars. In the world of scientific research, that’s actually a relatively small amount of money. The scientists involved all seem to believe (to a person) that there is a potential therapeutic for this disorder on the horizon. I’ve dedicated myself to helping raise the money and awareness. I have no choice really. I want to talk to my daughter one day. I want her to sing one of my songs one day. I’d like to hear her slam the door on her brother one day while yelling “get out of here – I’m getting dressed!!!” or “taking a bath!!!” or anything other than the world she is trapped in now. In December, our foundation will hold it’s second annual FAST Gala in Chicago. Actor Colin Farrell will be on hand (his son has Angelman Syndrome) as well as other noteables. If we could get Jack Black and Ben Stiller to give us the warm fuzzy comedy ending, trust me …we’d do it. It will be a room filled with parents who also want to talk to their children. We’ll chance people rolling their eyes at our cause. We want your money. Before that event however, I want to do something here in my hometown and get my Nashville peeps involved. Therefore, on October 23rd, 9:30 PM at 3rd and Lindsley (Nashville TN) I’ll be hosting the 2nd annual “Bella Bash.” We’ve named the event after Isabella or “Bella” as we call her. The evening will be filled with music and fun. I really want it to always feel like a party and a good time. We have enough darkness in our lives – let’s laugh and sing and be together. All the money raised goes directly to the FAST foundation. We started the Bella Bash with a rule …all of the talent must volunteer – no one gets paid. So far, it’s been an overwhelming success. I’m humbled by how many brilliantly talented people have been willing to donate their time and talents to this cause. This year promises to be a great one. Mica Roberts, David Cleveland, Ben Reynolds, Gary Muledeer and myself. That’s not a bad show folks.
You can go to BellaBash.com to purchase advance tickets or just make a donation (all tax deductible). You can also go to CureAngelman.org to read up on Angelman Syndrome and the FAST foundation. I’m usually not one for the “hard sell” but when it comes to my daughter, I’ll do whatever I have to. If you’re in the Nashville area, please come support the evening. Even if you’re not into causes …you might just have a good time!
R