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, January 18, 2011

Vanderbilt University Kennedy's Center-Stop Seizures Now (Please Help)

"Rise up, this matter is in your hands. We will support you, so take courage and do it." Ezra 10:4

We are all not going to be doctors, lawyers, or people who make millions of dollars a year. That's okay, because God gives us the tools that we need, to find a level of satisfaction, and to help others that have the talents to make discoveries. While trudging through life in a uniform, instead of being that cigar or beer taster that I've always dreamed about, I have to admit to a lot of imperfections. No matter whether you have loads of money in your savings account, or whether you have mere pennies, none of us is perfect. Yet I am blessed and consider myself to be fortunate. Yes, I had to face the tribulation of burying my child Tommy, who passed away at age five due to seizures related to his Angelman Syndrome condition. Yet there are others who've been in the same boat, and you have two choices. Either give in and wallow in misery, or fight on and make a stand despite the pain. The second option is the correct one, and I hope this post will enlighten folks to understand why Vanderbilt University's Kennedy Center Angelman Syndrome program is so important.

The Vanderbilt Kennedy Center is staffed with phenomenal people, who have already had a lot of successes with the seizure issues involving people who have Angelman Syndrome(deletion of Chromosome 15). Too many people with Angelman Syndrome have suffered long hospitalizations, delays in their development, their quality of life, or their life itself for the status quo to be considered acceptable. Vanderbilt University and the Kennedy Center are making strides daily, in the fight against these dreadful seizures. Their research team deserves both our thanks and respect, for what they do, as they are passionate about getting seizures cured. They are our best hope, and while we aren't there yet, there will be bumps along the road, this team is going to make the groundbreaking discovery that's going to have an amazing effect on so many people.

Right now, here is what's going on at Vanderbilt University, and this should just be considered the "tip of the iceberg." Their work on Angelman Syndrome may hold the keys to help all with seizures, and they are "burning the midnight oil" with dedication and a lot of coffee. Let's help them get what they need, and that is funding. Yes, money. This is what they need to further their projects, and if you wonder why should I send them $5, $10, or even more if possible, consider the merits of their work.  Its impressive, as they have several teams working on the Angleman Syndrome seizure problem, including one group that's focus is EEG's, and how to detect and stop the seizures effectively with this tool.

Another group is working on sleep patterns. Angels don't sleep much, and is this what causes more seizure activity, or is the lack of sleep due to the electrical brain patterns being abnormal?  One group is looking at Angels brains through MRI imagery, to determine if the wiring is causing the seizures, and what might work to prevent them from occuring in the first place. A particular fascinating study involves mice, which have the deletion of an Angelman patient. A team is working with them to figure out how certain medications can stop seizures from happening. Their success rate is astounding. Anesthesia is a constant concern for parents of Angels and these folks alike. A group in this foundation is looking at that, because until there's a cure, its a fairly regular occurence to use medically induced comas, to stop seizures. This could decrease complications, and ultimately result in quicker recovery times.

Yet the group of this Vanderbilt program that really has opened my eyes, is the Stem Cell aspect. Here researchers are actually taking stem cells from "Angels" skin, and checking the cells to understand them better. This will give medical professionals a better understanding of an angel's basic body functions, and how treatments geared to these cells that are different, could allow treatments to stop seizures. Totally incredible, that this research is being done with love and dedication from the folks at Vanderbilt. We need to get behind them, through our congregations and corporate contacts, as well as individual donations. If you would like to help them find the cure, you can go online and be a part of this effort at Wouldn't you like to be a part of something so special? When a cure is found, which it will be, you can be what Tony Dungy talked about in his book "Quiet Faith." That is, your life can be of significance to someone else, which is the most important aspect of our being.

It is too late for my son, and other angels who have passed away from seizures. Yet, we must stop another family from going through a similar heartbreak. I'm not angry with God, as I know He's protecting my son, and the other angels who've left their loved ones far too early. There has been a lot of agonizing and prayers, with the end result being to help Vanderbilt University strike these seizures down. Has there been a burning bush or booming voice at my doorstep? Nope, and I'm thankful for that, because I'd have even less hair and higher blood pressure than I already do have. Yet, its been through the love and compassion of so many, that the answer was as clear as anything else in life has ever been. Vanderbilt's researchers have God given talents to find the cure, but they need foot soldiers to generate funding to get the job done. If that isn't a project that's worthy of our faith, full hearts, and dedication, then I don't know what is. Please help them continue to make the strides they have already accomplished, and propel them to the glory that we all can share in. God bless them, and if you can help them with even a small donation, these do add up, and will ultimately allow us to be a part of a victory that does matter.

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