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, June 19, 2012

Facebook, Special Needs, and Inclusion

Facebook has greatly enhanced the awareness and knowledge, of conditions such as Angelman Syndrome, CDKL5, Fragile X, Rett Syndrome, and a host of others that were relatively unknown. I am very thankful for this site, as it has also been able to raise funds for charities that operate on behalf of these causes, along with facilitating communication between parents and families across the world, for which facebook really is a "lifeline and resource" rolled up into one. Yet facebook does lead to some issues, and those would include cyberbullying and writing posts, but not having the guts to be held accountable for them. I have been guilty of arguing with folks on Facebook, and not displaying the best words, along with dropping a person out of a group that didn't deserve it. I have apologized, not only because it was the right thing to do, but simply put its about being a responsible adult.

There is definately a "facebook disconnect." For whatever reason, its even more quick than a fast, hastily written email, that is written later. At the same time, there are people who like to get together to just slam someone, or rip apart families who have similar conditions, instead of supporting them at their time of need. Instead of displaying sociopathic tendencies, wouldn't it be better to lift them up? Just like in real life there are cliques, and that's fine, but here's the bottom line. You can defriend someone, nothing wrong with that at all. Yet to block another member of your family, whether its Angelman or Rett Syndrome or any other condition, makes you and others blind to situations that could be helpful, or provide comfort. Keep your message box open, as you never know when someone might need your help, or you may be in a position of need. There are simply not enough people in our families, to be constantly bickering, and losing our eyes on the prize.

Its a way to lose support for whatever charity you support, and in the fight against any medical condition, its always better to have two bullets rather than one. You can support one or the other, but I like to think that two methods of attack make more sense. If you look at historical precedent, all medical discoveries and inventions have been conducted in such a manner. It was an honor to meet researchers at the Epilepsy Foundation Walk this past year. They aren't guys and gals that I'd probably kick beers back and smoke cigars with, because, they are smarter than I am by a million times, and we have different interests. That's cool. Yet, looking in their eyes, we do share a competitive spirit, although to their credit, I think they get the edge on that one too. Very impressive.

Constantly writing posts, deleting them, denying them, or refusing to put your money where your mouth is, or getting groups of people to slam one person, is cowardly. In the "real world" its "incitement by mob." I am glad the "real world," is a much better place than the Facebook one, even though that site and others do serve a purpose as mentioned previously. I am not angry at anyone I've sparred with ever, and in lieu of events that I've seen this week, I'm not either, even though I felt there were more than a few statements of poor taste. Disappointed would be the best word. Just like in the real world, we don't have to hang out with each other and be all "buddy buddy," but by God, we must always keep our eyes and ears open to what our neighbors are going through, no matter what land or background encompass us.

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