Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Tuesday, December 6, 2011

Dr Elizabeth Kubler was Right. Steve Jobs, his Batting Average was High Too.

"Nothing happens by coincidence." Truer words have never been spoken, and these were by Dr. Elizabeth Kubler Ross. "Biology and technology are going to come together, in the ways that my generation was introduced to computers, to develop cures for a whole variety of treatments." Steve Jobs. So how on earth can these two polar opposite personalities, who have passed away to God, be somehow connected? Steve Jobs was known for throwing tantrums, calling people multiple conjunctive adjectives in one sentence, while Dr. Ross was bringing the compassion of end of life care, and an approach to dying to so many of gentle means. The fact that they are both dead is not part of the first part, although today I thought about both of them as I sat by my son's gravestone. In the rain, the pain did not go away, but neither has the hope.

I first want to congratulate FAST, the Foundation for Angelman Syndrome Therapeutics.( They are bringing so much excitement to families who love someone with Angelman Syndrome. Their compassion is very much appreciated, and their zeal and quest for a cure is admirable.  On December 10th, that's right, next weekend, you can watch parts of the recent FAST gala on NBC. For others, youtube or other sites might be helpful in this. At the same time, the ASF( , otherwise known as the Angelman Syndrome Foundation is doing exciting work. There is going to be some thrilling news in January, that is going to pardon the pun, rock the "foundation" that all of us have ever believed. January is going to not be a cold month, but one full of warmth, and passion. With that business aside, I'm going to share a personal story, and date myself a bit, more than the few grey hairs I have left on my head. Grey hairs, are truly a bald man's best friend.

Think about what Dr. Ross said about "no coincidences," and what Steve Jobs said about "Technology in Biology." Keep those in mind with the work of both the ASF and FAST, but also in regards to our war on seizures. If seizures were a person, there certainly wouldn't be anything left, as parents, family members, and those who have them, would put a foot up their ass, to say it nicely. Yet that time has come, and a lot of it can be traced back at human history. As polio was cured a long time ago, and other ailments along the way, we no nothing of value happens overnight. Yet when you look at history, with a long lens, let's look back to Apple Computers. That's right, Steve Jobs's company. I was remembering playing on the Apple IIC, back in the mid 80's, and how baseball used to be "press a for hit, b for bunt, c for slam, d for stand". There were no images, just words saying what happened, in that horrible green font. Steve Jobs would use a stronger statement, with a certain four or five letter phrase. How about that Odyssey system I used to play on, a precursor to Atari? The squares that represented racing cars were great, sarcasm intended. How about that clunky cellphone that was the size of the nuclear football, that has to chase the President of the United States around, or having to connect to a phone to get on the net? Remember those wait times? Good luck with fast streaming media on that.

Now, medicine is getting a boost, at the molecular level with technology. Computers, not by coincidence, are now responsible for much of the research, and are a helpful tool to humans working relentless hours, for a cure for conditions such as Angelman Syndrome and seizures. In fact, this work is very much related, and is the key to it all. Computers have allowed for the unlocking of DNA sequences, and various mysteries such as therapies that are going to serve all of humanity. The best part is, it is for a reason. Do you not think we are getting ahead quicker than ever, has no reason? Of course not. "No coincidence," Dr. Ross is completely accurate. There is a reason Jobs had such a "high batting average." No coincidence on that either. Now it is up to us, each and single human being, to now march forward to these cures for Angelman Syndrome and seizures, hand in hand, because the gene associated with this condition holds promise for other conditions, including many on the autism spectrum.

My son is missed. That rain led to more of it, that was released from my eyes, but I shall not give up. Not until my very last breath on earth shall I, and today I am even more hopeful that seizures are going to be cured. It took a prayer that led to a call, as the answer that I've been searching for, has been discovered, and soon will be made for public consumption. January 2012 is going to be a month to remember, as those of us in the Angelman Syndrome Family, and all other conditions that are on the autism spectrum, and so many more, are going to be very pleased with the news that is forthcoming. It is too late for many of our children, our loved ones who have been affected by seizures, and those whom have had Angelman Syndrome, and its host of other components that lead to sickness, injury, or death. Yet you have all remained steadfast, united, and dedicated to the cause. For that reason alone, along with what Dr. Ross and Steve Jobs have proclaimed, we can soon celebrate the future that holds more than we could have ever imagined. It is a beautiful one, and now is the time.

No comments:

Post a Comment