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.

Wednesday, October 28, 2015

Steven Rouse, Your Love Never Ends




"Tell my Mom I love her." The final words of Steven Rouse, who was only 22 years old and from Greenville, North Carolina. A young man in the prime of his life murdered, stabbed multiple times, with hatred and aggression that have been seen since Biblical times. As a father who's lost a child, I cannot even begin to comprehend the anguish that his mother Portia Rouse is going through right now. To wait several days for her son's body to be cleaned up of multiple stab wounds, all because he was bullied for being different. The autism spectrum is wide, but what is not is love, and reading about Steven has intrigued me although I wish he had got to continue his dream of being an orthopedic surgeon. This young man had Asperger's, which is on the spectrum, and despite that had a genius IQ. Yes, he was different from most with some quirks, but they were lovable. A young man who loved all, and despite maybe not being as verbal or outgoing as others, his last words speak volumes. He loved to give hugs, and was living quite well in his new apartment.

Two evil men bullied him for a long time, and on October 19th stabbed him to death multiple times. On the gofundme page to help his mother Portia with final expenses, she stated "Who expects to bury their own 22 year old son who's been murdered?" I watched her at the funeral service on video, and cried many tears. This poor woman spoke with love, resolve, and with a determination to make sure something like this never happens again. She spoke of forgiveness, and plans on continuing Steven's legacy of love by supporting awareness with regards to autism and bullying. I commend her for her efforts, and if you can help in any amount, please go to https://www.gofundme.com/696w8gps.

Next week will be Tommy's six anniversary of his passing. There will be time spent by his grave, and tears will certainly be shed, as he'd be eleven years old right now. Its a hollow pain that cannot be put in words, because the emptiness and heartbreak are deep, soul thrashing in nature and no parent should ever have to go through this. Yet Portia Rouse is. And in her case, there is far more pain, of which is just profound beyond any measure. Watch her speak and you will cry, and that's okay, because Steven loved to give hugs, and his life was one cut short by the evil of bullying. Yet you can help by either spreading this message of love, or making a donation to her gofundme page that was set up by her friend Robin Suggs. God bless her, Portia, and Steven who's certainly in Heaven, and pray for her as she needs all of our support during a time no mother should ever have to endure. "Tell my mom I love her," despite being stabbed multiple times, shows the love of a young man who should be fulfilling his dreams.

Tuesday, May 19, 2015

Vienna ES 5K: Team Tommy First Run 2015


It was a lot of fun despite the somewhat rainy weather, to engage in the first official Team Tommy 5K run about two weeks ago. There were some nerves prior to kickoff, because as most runners know, being with a group rather than alone can change a lot of elements. The worst one is the "pushing yourself too fast," and while tempting it didn't happen, as I completed the 5K a bit slow. 29 minutes and some change, but you know what, it simply doesn't matter. Almost two years ago I could run a 7:30 minute mile over 13, or under a 6 minute mile if bet enough cash. A tear of the LCL led to surgery, and to be frank, I'm just flat out happy not to walk with a limp anymore. That got pretty old, looking like the AARP card and senior discount coffee would be served prematurely, along with the chest high plaids approaching at ludicrous speed.

The run was the first official one I wore the Team Tommy shirt. No one asked any questions about it, but that's okay, and the goal was mere survival. The fun part was watching Tommy's younger brother run his first mile event, and he loves the ribbon he got for completing it. He ran with his Pop Pop, both having a blast, along with a grin at the end of the race. When the 5k started, I got in the middle of the pack. The whistle blew and the group of about 500 or so took off. I felt good at the beginning, but the hills did seem to be larger than I remembered. While the red shoes felt fine, the legs did feel sore, and my breathing was more labored than expected.

You'd never know how much it meant to see that finish line. There were times I thought "I can't do this." Yet somehow I maintained a clunky pace, and when that line was crossed, I breathed like a labrador sweating under the sun. The past couple of weeks there have been some small runs, but mostly weight work. In the coming months, two to three more official runs will be completed, and hopefully more awareness. Thank you to all who've been supportive, and here's to you all getting out there and being active. #teamtommy

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.


Monday, January 26, 2015

Why You Should Support Team Tommy



"All of us are born, and all of us die." There are no guarantees what day your last breath on earth will occur, but there's no getting out of it. Quite often in the west, we consider death taboo, yet when you consider it, Steve Jobs said it best. His quote of "I am grateful for death, it motivates me to finish what my dreams are," is a reminder that each and every one of us is mortal. No matter how much money or power you have, along with hopes and dreams, they will one day end.

The autism spectrum is confusing, as so many families across the world, want a definitive scientific answer rather than a clinical one. Angelman Syndrome is on the autism spectrum, and it is the only one, that can be literally diagnosed via a blood test. Its called Fish,and it can decipher the partial deletion of chromosome 15. This could eventually lead to other autism related diagnoses via a non human method, which is what a lot of parents seek at this time. Right now the Angelman Syndrome Foundation((ASF) and Foundation for Angelman Syndrome Therapeutics(FAST) are conducting more research into this, along with ultimately discovering a cure for this confounding disorder.

Angelman Syndrome is named after Dr. Harry Angelman, who noticed some similarities of cases in the 1960's. If you don't believe in medical love, listen to the man's voice on recordings, and you will hear it. He was passionate about "angels" in his life, and although he is gone, his legacy continues on with the research of doctors such as Weber and Philpot. That's just the tip of the iceberg, as more scientists and medical professionals are studying this quandry, and have already given mice Angelman Syndrome and cured it.

FAST and the ASF are both highly rated, and led by exemplary people, along with thousands of parents who volunteer a lot of time and effort to these causes. Every bit helps, and if you donate to them, or through this page, your money is going to a great cause that will help. Its too late for a cure for my boy, and other angels, but its not too late for others. No more angels deserve to die young, nor do their families need to go through a suffering, of which is so brutal that words can't describe it.

I hope with all of my heart you will help spread the word, and if possible donate to these groups, or help Team Tommy at http://www.gofundme.com/iy51xo. There's no giving up, because while each of us has a clock of activity, its best to use each second and minute to the best of its ability. Let's support the angels, their families, and people across the world whom want the ability for a blood test. It might sound trivial to those who are not directly affected, but I can tell you from direct experience as can many, that knowing what you are dealing with is a relief all by itself. It might not be the answer you are looking for, but once you understand what you are up against, it makes things a bit easier and allows you to help a little girl or boy a lot more effectively.


Tuesday, December 16, 2014

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

http://www.gofundme.com/iy51xo




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

http://www.gofundme.com/iy51xo

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 :)


Wednesday, June 11, 2014

A Family Needs Your Help, Let's Do This!







All of us are at a minimum related to each other 3%, and one of our family members is suffering. The word "suffering" is used quite a lot, but to grasp the significance of what they are going through, there's just no way at all. If you have heard the John Mellencamp song "Small Town," you know the type of place in Maine where these wonderful folks live, and some of their neighbors have stepped up. Yet in the untimely death of a father, many don't know what to say, or even that help is needed. People have their reasons for not wanting to be there for this family, and to a degree its fine, because many of us are hurting economically, or simply don't know what to say.

When I heard the news of the "Mac's", my heart dropped, because I understand what its like to lose a child. The gut wrenching pain they endured several years ago, its something close and very clear, because its a road that no one should ever have to go down. Yet they have done so with both courage and grace. Burying your little girl, granddaugter is something you shouldn't have to do, but it is the reality of each and everyday, with answers being far from forthcoming. The winds may kick up, the Sun might rise from the east and set to the west, but everything previously known is thrown out the window.

Now this family has lost the father, the head of their household, and they need our help desperately. I will not judge him, and nor should anyone, because we all face our demons. Some of us can move on through life's hoops, while others fall by the wayside. His wife thankfully has her mom and other family around her, but they have been through a physical, mental, and emotional toll already enough. Then this added on top, along with all kinds of debts now pushed in their direction, makes them down the river without a paddle. There has never been a more clear and present issue that can be resolved, and the family is grateful for all of the support it has received, to keep the electricity on, or people from shutting their house down one month ahead of a baby's birth.

It doesn't matter if you donate $1. Nor $5, or even $6.99. What does is that each donation to http://www.gofundme.com/9iajn0?fb_action_ids=10203878653431694&fb_action_types=og.likes&fb_ref=fb_l_10&fb_source=feed_opengraph&action_object_map=%7B%2210203878653431694%22%3A668126846589098%7D&action_type_map=%7B%2210203878653431694%22%3A%22og.likes%22%7D&action_ref_map=%7B%2210203878653431694%22%3A%22fb_l_10%22%7D will go directly towards helping this family. They need our help, and they need it now. All of us want to see a healthy baby born, along with a seven year old girl, getting the professional help and guidance needed to carry on without her father. Seven years old. That's right, just a little one, who needs to not only feel our love but see the action produced by that. She's just in elementary school, and has her whole life ahead of her. She already has lost her sister, and now her father. There's no way to say it other than how horrific this is. As adults, we are better equipped for traumas, but she is at a age where we need to step up. Thank you for reading this, and if you can help this family, or spread this message, it would be appreciated by them and so many others.