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.

Friday, March 6, 2015

Team Tommy: A Run to Cure Angelman Syndrome



One day my tall frame is going, to be sitting on a steel slab in a mortuary office. People in white smocks will walk by, as they do, because with life comes death at the end. Yet until my last breath, I must do what I can, as a simple person to deliver financial assistance to Angelman Syndrome support groups. Its my hope to live until 100, and while that's up to the stars, Team Tommy was conceived to help that process. The basic premise was built upon several doctor's reporting either "you'll never run again, or you are going to need a knee replacement."

It would be nice, to have cooperation from the weather. This winter has been among the D.C. area's worst, but I have several one mile runs under my belt. While the goal is 10 plus mile events, there are a lot of events in life that cannot be planned. My own five year old son being found unresponsive was not, and quite often I think about how he'd be twice that age now. I have no doubt he'd be walking, and loving the water and his family and friends whom miss him so much. There's no rhyme or reason to why he died, from a seizure in 2009, but there has been a slew of emotions. The five stages of grief are so true, and my heart breaks open once again, when I have heard of other angels losing their lives far too early.

There may not be much I can do. Who knows if its ultimately worth it, as there are no guarantees. Yet the alternative of just resting on one's laurels, is proof that by sitting around collecting dust, you don't stand a chance. One out of a hundred is better than zero, and with the work of groups like the Angelman Syndrome Foundation or Foundation for Angelman Syndrome Therapeutics, many parents, friends, researchers, and doctors are fighting this genetic condition. Its up to you how to battle this, because lots of good people are, but I choose to by running. Standing tall, firm, and going forward.

I would like to thank the kind people, who have donated to Team Tommy on the gofundme page at http://www.gofundme.com/iy51xo. It doesn't matter the amount, but by sharing even this page, its 84% close to its goal of helping both FAST and the ASF. 40% goes to each group, with another 20% to the Maryland Parks and Recreation Association Tommy Ross Fund. That helps disadvantaged youths with disabilities, to enjoy activities such as therapeutic horse riding or swimming events. If you could please share this or the "go fund me" page, it would be greatly appreciated.

There will be a sunset in my life, just like everyone has to go through. All of us are born, while all of us die, there's no denying that. Yet its up to each and everyone of us, what do we want to do with our time on the stage? In my opinion its better to "do than don't", and while I wish that others and my family didn't have to go through the loss of a child, I do love kids and adult with Angelman Syndrome. They truly are incredible, their cherubic smiles, laughter, and eyes that just reveal a soul far better than any of us carry in our hearts. Please join me in this effort, and by all means get out there and start running.


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