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, December 16, 2014

Team Tommy: Go Fund Me, Support Angelman Research Right Here

The Go Fund Me Page for "Team Tommy" is up. You can find the direct hyperlink above, and its for a good cause. While the running shoes are on the way, as is the shirt, its never too early to start this effort. Most know Tommy Ross passed away five years ago, and while its not been easy, I'm just one traveler of many who's been down this painful road. A lot of kids with Angelman Syndrome or AS, have passed away due to accidents, seizures, or other related events due to this debilitating condition. Enough is enough, as its time for a cure. Its also a way to enjoy running, meet others, and learn their stories too. Each and everyone of us has a story, with chapters that are good and bad.

Tommy is missed. Other children are too, and each time when I run with the "Team Tommy" shirt whether practicing or at an event, I will be praying for all families that have lost a child. At the same time, I'll be praying for a cure for this condition, that was discovered by Dr. Harry Angelman and of course named after him. Both the Angelman Syndrome Foundation(ASF) and Foundation for Angelman Syndrome Therapeutics(FAST), are excellent organizations that are doing everything possible to move Heaven and Earth for a cure. They have also been helpful to families with someone who has AS, along with caregivers, teachers, friends, and a whole bunch of connections to other groups and research on the autism spectrum.

80% of money raised will go to FAST and the ASF, because these two groups are the leading edge of awareness and research. You can rest assured knowing your donations will go to responsible groups that believe in stewardship, and making sure each cent is delivered with full potential. Far too many charities out there have questionable alliances/motives, or administrative costs that make you wonder. Yet as I type this, I can sleep at night literally knowing that these two organizations exemplify the best of the best, and have the greatest chance of discovering a cure for AS.

20% is going to the Tommy Ross Memorial Fund. Yes, some money should go to those whom are less fortunate, to have an opportunity to engage in therapeutic or recreational programs. This has been set up by the truly lovely folks at the Maryland Parks and Recreation Association, whom my father used to be employed by. Their members have been extraordinarily kind, and knowing a few youngsters each year will get an opportunity otherwise unfulfilled, is beautiful beyond words. I thank each and everyone of you that share the Team Tommy GoFundMe Link, and appreciate your support with the upcoming races and outreach efforts. #Teamtommy

Friday, December 12, 2014

Team Tommy: A Return to Running, Let's Help Angelman Syndrome Charities and a Good Cause

"You won't be able to run anymore." "You need a knee replaced, your running career is over." These were two comments from orthopedic surgeons, and even the one that I liked who repaired my LCL, believed that perhaps it was "time to hang up the cleats." It was such a joy running, having been out running half marathons, and meeting so many amazing people. There were easy courses where I could simply zone out to the music from the ipod, while others challenged every fiber of my being.

When I first in 2013 felt that pop in the fall, I thought "no big deal." Yet it was knee surgery #3, and I was told by the surgeon "Your knee still looks like s*it." There was some physical therapy, some work on various muscles, but I failed miserably. Not even able to run a half mile, nor allowed to enjoy a rainy night, that so many take for granted. 2014 was a terrible year, as I almost got literally hooked on vicodin's and other pain killers, and had to face a decision. Several doctors told me, "Its time to replace your knee, you might be able to run again, kind of." That wasn't very encouraging, but after a lot of research, I'd like to say a huge profound thanks to my former surgeon Dr. Samuel Hawken who's bedside manner is unique, and Dr. Fullbright and the staff at the Anderson Clinic. There's a reason Mount Vernon Hospital is known for its knee procedures. Those guys are great, and I'm happy to recommend them, as they were able to wean me off of pain killers, discover a prescription shot that works, and I have been ordered to run.

I'm not sure how far I'll run again, because at this point, per the doctor's advice I'm at a 10 mile limit. That's okay, as the time limits are no concern anymore. There won't be a sub 6:00 minute mile, or 7:30 mile times over a half marathon. Yet what there will be is resolve, a smile, and a new effort to raise money for Angelman Syndrome awareness and research. As most know this young boy was my son Tommy, who passed away in 2009 at age five, due to a seizure related to this condition. He is missed, as are many "angels" who've in the opinion of many, have gone on far too soon.

Tommy and the other angels who have passed on, are in the hearts of many. Countless families across the USA and around the world, understand what that empty space means, and how crushing it is to be without that smiling and laughing angel that could light up a room. With that in mind, while I don't think the inevitable "Go Fund Me" Page for Team Tommy, will make a lot of money the chances for outreach are unlimited. The proceeds raised will be in this percentage: 40% to FAST(Foundation for Angelman Syndrome Therapeutics), 40% to the ASF (Angelman Syndrome Foundation), and 20% to the Maryland Recreation Park Association Tommy Ross Fund. This was set up by that commission in honor of my father's retirement, and helps families who have children with special needs, have a chance to enjoy recreational or therapeutic events that wouldn't be otherwise possible. Everyone knows the ASF and FAST are great, so the shirt has been ordered. Its bright red with the letters "Team Tommy," and will be worn with matching red Nike Fusion shoes. That was his favorite color, and it will be an honor to run in his memory, along with other angels who've been inspiring.

This is just the first post, and much work is to be done, yet it would be great if people could get this "shebang" started. That's right, I'm going to need your help, because let's see if we can come together, and raise money for two organizations that are directly confronting the horrors of Angelman Syndrome, along with a scholarship that provides families with relief. Let's do this. More to come, but the emergence of #TeamTommy is going to arrive 1/01/2015, and no matter what the temperature, let's turn up the heat :)