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.

Wednesday, October 31, 2012

Fighting Seizures: Don't Undermine Organizations Working on Cures

In the battle against seizures, it is much like a war, in that groups and parties of different views have to make alliances. It would be simple to say "its my way or the highway," but in reality, folks contending with epilepsy have to work together. The underlying medical condition causing seizures doesn't matter, whether its Angelman Syndrome, Rett Syndrome, Generalized Epilepsy or any other name. These are mere labels, diagnoses that are useful in medical corridors, but not so much when it comes to serving on the front lines. These are a public venue, and while not everyone is going to get along, or be "buddy buddy," what does matter is that we are on the same page. If General Patton of the US and General Montgomery of the British during WWII could at least see eye to eye on some levels, then by the grace of all common sense, then the rest of us can with regards to organizations. It does not matter what the organization is, what matters is that it is working on a common enemy, and that is the seizures that continue to negatively affect so many people, along with causing deaths of children and adults across the world.

Sadly a few individuals like to bite the hands, of organizations that are going to great lengths, to combat seizures and other medical conditions. If you constantly want to badger them, you are nothing but a parasite, and your help is not needed. We all make mistakes. I make a lot of them. Yet I do not constantly smash an organization, by under minding their efforts. If I have a concern, I confront a person directly, or through a phone call, or a private message/email. Only if I have proof, empirical evidence that shows clear, convincing, and untainted negligence, would I ever go public. That would be with an arsenal of lawyers in a civil case, or law enforcement in a criminal case. For those who "screw with special needs kids," I will not hold back, and in one case while the effort went too far, I am happy to report that changes have been made. In fact, kids with special needs are being treated better than ever before. It was an imperfect battle, but the war was won.

Yet charities, 503b's, have enough headaches to contend with, than being bashed around with nefarious activities.Any charity that helps kids in need, should not have to deal with a bunch of miscreants, miserable creatures that try to suck every ounce of blood from them. Its a self defeating strategy, and a complete sign of weakness. Imagine if during WWII the Americans, British, and Russians decided to "screw with each other." They'd be playing right into the hands of Hitler's evil machinery. Instead, they worked on the same page, even though they did have some differences. As adults, it makes sense when we see an issue, to bring it up to a person or group we have a problem with, in a manner that is not detrimental to hurting families and their children at need. Any other course of action, is cowardice, and should be treated as such. You can pick what charity you support, and by all means please do. There is work to be done, and it must be done with haste, because a cure for kids with all kinds of medical conditions, needs to be found. The seizures must abate, before we lose another child.

It is too late for my son. Yet it breaks my heart, when I see grown ups, using their kids as pawns, in some sort of dumb chess game, that is going to end in a loss for everyone. We all have dirt under our fingernails, but the time for finger pointing is over. Facebook and other social media are fantastic tools, when used appropriately, and for parents just learning that their child has a medical condition, they rely on charity pages to determine what the best course of action is, as well as getting information to help their little girl or boy. Its more than okay to be angry with someone, or if you don't like an organization, to leave it. By all means. Yet to trash it day on, day out, night after night, it becomes akin to being that bloodsucking leech that offers nothing of significant value. So its up to you, to be a champion that rises to the challenge of the war for a cure, or a loser of everything that we hold to be sacred.

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