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.

Saturday, December 29, 2012

Angelman Syndrome: In the Coming Years

I don't know if there is ever going to be, a cure for Angelman Syndrome. It is my sincerest of hopes that a breakthrough occurs, and if not a cure, at the very least for medicines and treatments that can help those with this condition. Dr Harry Angelman is not alive anymore, but his legacy from his discovery and further works live on, as does the science being done at laboratories, universities, and hospitals across the world. Yes it is too late for my son, but I will be shedding tears of joy, if a cure can be found. I will also respect the decision of each family, to go through with a cure, or keep their angel just they way they are. Research is promising, and with regards to treatments via mice and with other technologies, along with cancer fighting drugs, there is hope. Yet it is with all of my heart, that parents of those with Angelman Syndrome, don't lose focus on the current battle.

That is awareness. Right now a parent is just finding out there child, has this condition, which is caused by a partial deletion of chromosome 15. As a society, we must be there for all families learning this diagnosis, which is devastating on many levels. You realize that your kid in most probability, unless something dramatic happens in the research field overnight which is rarely the case, will be severely cognitively impaired. Yet that's not a reason to give up, as a child with Angelman Syndrome, has more love in their hearts than all of us combined. There are still doctors who have not heard of it, but that has changed over the years, and advances through social media and other parameters have changed the equation. May this continue, and along with helping families who have an angel, let's pray that the research bears fruit.

In my close to forty years on this earth, I have seen amazing leaps in technology and medicine. The other day I was on the net, looking at 80's computers, and we've come a long way. To think that our first phone looked like a suitcase, and the current smart phone I have, has more computing power than any of the Apollo Missions is fascinating. You don't need a super computer like a Cray, to figure out mathematical equations, or crunch scientific data anymore. The DNA sequence discoveries, along with emerging technologies and tests, shows that the potential for cures for a myriad of conditions is indeed possible. I hope that is the case with Angelman Syndrome, and the day that occurs, I hope to be here and crack open a bottle of champagne.

What I like the most about a lot of the new treatments, is that they are not controversial. There are no embryonic stem cells being used, and a lot of the drugs employed are already FDA approved. Just like other medications, the cancer fighting pharmaceuticals show a lot of promise, in that they have other intended uses. The UE83A Gene is fascinating, in that it could be a definitive marker for autism, along with being related to the seizures that not only "angels" experience, but hold relevance for the entire epilepsy community. 2013 is going to be an exciting year, I have no doubt about that, and like others I am praying that there is an "aha moment," where the breath taking discovery will be made. Its up to all of us, to continue to march forward on that path, while supporting one another to that very destination.

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