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 13, 2011

Vanderbilt Kennedy Center-The Angelman Seizure Research Project's Dream

Did the egg come before the chicken? Perhaps. That old adage has been used to describe a lot of events in life, and it is time for children with Angelman Syndrome, to have the perfect medicine combination, that is going to stop them from suffering from numerous seizures, or worse. Death. That's right, its the five letter word that nobody likes, but it is a reality. It has happened to numerous parents of children with Angelman Syndrome, and it must stop right now. There are no words to describe this pain, that parents whom have gone through this, and there are more than we know, have to endure. Our hearts should be with them, and instead of looking away, we should look right at this topic.

"People die everyday." These words were mentioned to me the first time I did CPR on somebody, and I am grateful for them. I was shaken up afterwards, but the statement is true, even with our world class medicine. Yet, there will be no giving up, despite the tears, the passion, the questions, anything. Instead, there will be a continued climb, that will look like a stock quote that is doing well, with of course some proverbial bumps but a forward trajectory. Vanderbilt's Kennedy Center in Nashville, Tennessee is one of those places, that families with an angel should be grateful for. We are blessed to have a researcher with an angel, and a Angelman Seizure Project that is, a work in progress like all of us. Yet this team is working on something that isn't sexy, but rather practical. That is a medicinal combination, that will stop non stop seizures in Angels. There will be less milestones crushed, parent's won't be stressed out having to watch their girl or boy whom they love, having seizures for days on end. And those parents, whom have gone down the road of kissing their child before that coffin closes, shall never have to again.

How do you get involved? Simple. Donate to the Vanderbilt University Kennedy Center, through their online giving section. Here you will have to type in "Angelman Seizure Project" under other, which is going to eventually change. If it means a 10 hour drive down to Nashville has to occur, it shall, but regardless what matters is the work of Dr. Haas and staff, that are doing everything they can, even with limited funds and time. They must get what they need, and it is up for us, each and every single person, to bring them what they need. It is not an insurmountable goal, but rather a challenge, and so far its already one step closer with people donating to this most benevolent of causes, through the online site, hearing a sermon, wonderful, compassionate people designing shirts, buttons, stickers, and the Angel Quilt Project, that is both painful and beautiful at the same time.

We owe it to children with Angelman Syndrome, to help them not have seizures anymore. While there are a whole host of fronts going on, as this is a war, one must be the seizure angle. No more, no more. If we do not stand up, and stick to our guns, climbing together through this war zone together, than all those who have battled prior to us shall have fought for nothing. "Its always better to fight for something than nothing." While I forgot whom said that quote, it is accurate in this case, and we must continue, to not give up, to look at these angels whom we love so much, and on the multiple lines, do what we are doing. It is time for the school of the Commodores to get this medicinal combination down, so we can take the next step. There are parents crying today, hoping their child with Angelman Syndrome can stop seizing up. Other parents are so worried, "Is this the time?" Unacceptable this is, and for these reasons alone, it is imperative that we get the Vanderbilt Kennedy Center's Angelman Seizure Research Project, what it needs, now. This is our time, it is a moral obligation, and we must through the tears and the pain see this work bear fruit.

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