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, August 19, 2011

"Are you better off than you were a few years ago?" The Angelman Community Is.

There has been so much blood, sweat, and tears in the Angelman Syndrome community. At the same time, there have been some smiles. Its been no easy endeavor, but what in life is? Upon receiving my son Tommy's diagnosis in 2004, huge strides have been made in generating awareness to doctors, schools, counseling groups, and the general population. Is there work still to be done? Yes. However, families that have a member that has Angelman Syndrome, or friends of these families that do become family as well, have had their lives greatly enhanced by folks such as the Angelman Syndrome Foundation, Foundation for Angelman Syndrome Therapeutics, and the Vanderbilt Kennedy Center. Our family was blessed to have had a pediatrician whom had another "angel" in this practice when we got the news that Tommy had Angelman Syndrome, but others have not been so lucky. There are still folks out there that haven't received a diagnosis, which is devastating, but the chances are much better now.

Is it great to hear that your little boy or precious girl has Angelman Syndrome? Nope, it cuts to the very essence of your soul, as all of your dreams are thrown aside. Yet it is better to contend with what you know, and how you can be of the most benefit to your child. Years ago, one would have said "huh?" with regards, to finding out information about Angelman Syndrome. Our pediatrician gave us some of the particulars, a geneticist helped us grasp concepts that my wife and I were not able to handle at the time, and the Angelman Syndrome Foundation walk a thon was where I finally felt "I'm not alone." Alone is a horrible place to be, but as misery love's company, there's a lot of happiness at Angelman Syndrome walkathons. Its a place to bond, to get to know other parents, and to learn more about experiences that are often done by "trial and error." FAST has been working on a cure with folks like Dr. Edwin Weeber, and the Angelman Community as a whole has banded together through social media and other means, to become stronger than ever.

All of our hearts, should go out to those, whom never got a diagnosis for what was going on with their son, daughter, nephew, niece, granddaughter, and grandsons. Yet in 2011, a FISH test, that is able to determine if there is a deletion of chromosome 15, is readily available. There are systems in place to help families learn all they can, and all Angelman parents should have honorary law degrees, after doing so much research. Yet even more importantly, Angelman parents have a unique bond, and often are able to provide advice and support to each other. Whether its face to face(most helpful), or through phone calls, and using social media, its able to realize that there are others whom are going through the same challenges.

We still have a long ways to go, but great strides have been made. That is something that all of us can be proud of, because even though we have been tested, we don't understand the meaning of "quit." Instead, we understand "resilience" much more. The Angelman Community is fierce, one devoted group, that shows a lot of courage each and everyday. I am thankful for organizations such as the ASF and FAST, whom both do fine work, along with community and faith based institutions that have lended loving hands of support along the way. A cure has not been found yet, for Angelman Syndrome or its devastating seizures, but with the same love, and battle tested group of families, it shall one day. I have no doubt about that, and we must cling on to that hope, while supporting each other until that glorious day occurs. Rome wasn't built in a day, but we shall advance instead of retreat, march forward instead of holding our position. Nothing short of absolute victory is an acceptable outcome.

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