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.

Friday, April 13, 2012

Angelman Syndrome: The Next Frontier: The Apollo Gemini Mercury Missions, Al Qaeda and the Egyptian Islamic Jihad? What?

This is an exciting time for those in the Angelman community. At the same time it is very stressful. There are twenty four applicants selected for a clinical trial in Tampa Florida, and all of our hearts, thoughts, and prayers should be with them. This is also a stressful time. Familes who have been close aren't so much anymore, and with the stretching of the calendar and endeavors of success, I am hoping that this will one day be nothing more than a molehill. Its up for all of us to believe in a higher power or not, regardless of whether you are Christian, Jewish, Muslim, Buddhist, Hindu, Sikh, or many of the other religions, organized or otherwise that exist. If you are an atheist, that is fine too. Christopher Hitchens, how can even the most faithful man not love him, and his provactive and inquistive questions? Last year we lost him of course, and I have lost a son to cardiac arrest, caused by seizures, caused by Angelman Syndrome. Every single day I pray, that no other parent or family has to go through this.

It took some time, deep reflection, and the change of many things, including hitting a reset button of sorts, by changing to a new church, exercising in new ways, and so many other avenues to come to the conclusion that my dreams for Tommy died on 11/04/2009. It wasn't easy to realize this. In fact, today's date is some 2 1/2 years later. This I am going to live with the rest of my life, as will other families who have lost a little boy or girl to Angelman Syndrome, or other conditions. None of us, I am sure, even on our worst days, would ever wish for a family to go through even one 1,000th of the pain such an event entails.

The two main charities in the US for Angelman Syndrome are FAST or ASF, ASF or FAST, however you like to put it. I support both, as I do any effort that generates awareness for this rare condition, that the vast majority of people have NEVER heard of. Even doctors. There are not enough families or people affected with this condition, to engage in fighting with each other, as this will lead to what can best be described in the Al Qaeda/Egyptian Islamic Jihad debacle. For those of you who are not familiar with what occured, first of all I'm glad just like people of any background, that Osama Bin Laden is fish food. Al Qaeda and the EIJ had an uncomfortable alliance, in that they had the same goals, and that was to kill "as many infidels as possible." This included people of all faiths, because in their view a Muslim who wasn't praying or died in the line of their terrorist attacks, was of no relevance anyway to their strategic goals.

Most of us should open our eyes, and have friends of all colors of the rainbow, all religions, and all countries. Angelman Syndrome doesn't discriminate. Al Qaeda and the EIJ failed, because there was too much division, finger pointing and spying on each other when none was needed, and too much mistrust. There was animosity, and in their case I'm glad for it. I'd be more than happy, just like any other sane person should be, to put a bullet right in Zawahiri or any of the remnant's foreheads. Yet, right now there is something important beckoning, and that is losing our eyes on the prize. My son rests six feet deep. It is my sincerest of beliefs that he is with Jesus, God, the Holy Spirit. To each their own though. If you do or don't believe in God or a higher power in any form, that is fine, but do not give up on our 24 brave angels, any future projects from the ASF or FAST, nor each other. We have a common enemy, and we may not all be friends, but by God, we must not let disagreements get in the way of progress.

In many ways the 24 going to Florida, are a lot like the Mercury 7, the Gemini 12, or the Apollo larger number of brave souls. They are going into uncharted territory, with their families who love them so much. We must support them, and help them in any way possible. At the same time, we cannot tear other angel families apart, for any reason. Handle disputes off line. I've been guilty myself of being feisty, if we could bottle the passion of Angelman families, I would, and copyright it. And thus be a rich, bald bastard and live in the Carribbean somewhere on my own island. Passion is good, yet when lots of parents, its not just one, but many feel as if they are not welcome, or are going to get ripped apart by a mob for whatever reason, there's a problem. I do not want to get directly involved in this. Yet I am saddened. I do not have any particular sides in this, but other than feeling sorry for so many families that love their angels, and want the drama to cease.

If the Americans and the Russians, in the hottest part of the cold war could come together for the joint Apollo-Soyuz mission, then by the grace of God angel parents can work together. Does it mean you have to get along? Nope, but the constant bashing and bickering, while the passion is good, does nothing to advance the cause. In fact, it hurts it. I've made no bones about it, I've let the folks at the ASF and FAST(their officials) know on back channels, that they need to put their foot down. Its your battle now. My family's battle is over. We will be more than happy to help out any angel family, to do what we can. Yet the bickering is causing tears and pain across this place we call Earth. We all have a common enemy. Angelman Syndrome. Instead of tearing apart each other, what do you say, its time we kick AS's ass?

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