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,
Mike
**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 toiletoctopus@gmail.com. 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 www.angelman.org. They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.
Mike
**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 toiletoctopus@gmail.com. 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 www.angelman.org. They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.
Sunday, February 16, 2014
International Angelman Day: It Might be Too Late for Some, but for Others Its a Learning Experience
There were some tears leading up to yesterday's International Angelman Day Event, as I sat with my four year old son, and realized how much he looks like Tommy. We were at Ruby Tuesday's, which was kind enough to donate 20% of proceeds to FAST, otherwise known as the Foundation of Angelman Syndrome Therapeutics. They along with other organizations such as the Angelman Syndrome Foundation, and others across the world were involved on February 15th, which is of course a number all who are aware of this condition know. 15. That's the chromosome deletion associated with Angelman Syndrome, commonly called AS, and it and the related seizures, are responsible for the death of my son's older brother. He was five, and while having going through the grieving process hasn't been easy, I accept what has happened and have moved into a forward looking position.
What would cause such a change? Acceptance. There's not a lot in life we can control, even if we are freakish about it, and have never failed at anything. Yet we are meant to fail in some regards, because we are not Gods, but rather human beings. We sin, we error, we get kicked down, but yet we get up. Humanity. That's what we are all a part of, and whether we like it or not, each and everyone one of us is related to each other regardless of country, religion, or any other so called check box by 3% at a minimum. I sit here this morning smiling instead of crying, because my son has been asking very good questions about his brother, along with Taylor whom he met last night. While its a lot to grasp for a four year old, and my wife and I want to continue his education at an age appropriate level, I'm glad we had the opportunity last night to participate in this event with a wonderful family.
I'm in retirement mode for the most part, because I realized the importance of stepping back sometimes. Yet at the same time, my prayers, the little money I can scrounge up, along with any Angelman Syndrome related endeavor is an honor to attend. Seeing so many pictures of angels on facebook yesterday, as always, makes me smile and sometimes laugh out loud. Yet I want a cure for these kids and adults, and love their families, who continue to amaze me on a regular basis. That is why you should support any AS research, and much love to all of the organizations who participated in this event yesterday, and Ruby Tuesday's provided quite a delicious meal served with lots of generosity.
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