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

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 :)

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.

Let's Help a Family in Maine, They Need our Help Now

Quite often many of us read a book, that has us shaking our head, wondering how a character or family or could endure so much trauma. There are movies out there that leave us crying, but these are mere works of fiction, and come no where close to the heartbreak of a real family that is suffering beyond comprehension right now. As we all know Angelman Syndrome has led to pain in other directions, because while you have a child that laughs, smiles, and is lovely, there's so many negative afflictions tied in with it. That would include the seizures, that took the life of sweet Kelce about two years ago. A family had to make the gut wrenching decision at the hospital, and even despite that, they have carried on.

Yet I can tell you from personal experience, that while wounds do heal, they truly never do close. I was stunned by hearing that Kelce's father took his life a few weeks ago. Yet at the same time the death of a child can be too much to bear for many, along with other stresses in life, and I'm not going to sit back and judge. Instead I'm going to ask you to be there for the Mac's, and be one of them for awhile, by supporting them as they try to pick up their pieces. These are real people. There is a mom who's about to deliver a baby left alone now, and the financial pressures such as keeping the lights are on, let's take care of her and make sure this little boy comes through with flying colors.

Even more of a concern is a young 7 year old girl, who in this small town, is being shunned because still people don't show support in the event of a suicide. This innocent precious 2nd grader is getting help, but needs much more of it, including professional services. She is blessed to have loving grandparents, aunts, and other family members, but this seven year old must be in not only our thoughts, but it is imperative that we step it up financially to keep the lights on for her, food in her pantry, along with help getting those specialists.

http://www.gofundme.com/9iajn0. That's right, I'm asking you to donate to this cause. As many of you know I rarely am this direct, but I am this time, because right now this family is not only going through more heartache than anyone I've ever heard of or known, they have literally been torn apart by Angelman Syndrome, seizures, and the death of the father. Each of us faces our demons daily, but this man's little girl, along with his wife, and soon to be born son should not have to suffer regardless. Yet they are, and that is why a few times in life, we have to be helpful in a financial manner.

Please spread this message, because God knows of their pain, but it is up to each and one of His creatures to help the Mac's. The small town is doing basically next to nothing to help them, so let's be their proverbial village, and show them that we care. Church and charities always deserve our support, because they do amazing things, yet let us turn the corner this time and do that for this family that's going through worse than what a Patrick Conroy novel can conjure up.Let's lift them up, and provide them at least a rope, because they are resilient. They are our family as they are related to us by a minimum of 3%, so if you can share this link, and if you can donate any amount, it would be beyond going to a wonderful cause. Remember the Maine, and never ever give up! http://www.gofundme.com/9iajn0

Much Love to Three Families: A Heavy Heart is the Best Way to Describe It

Years ago my grandmother died, and I still remember to this day, how she looked in her coffin. She was a warm, lovely lady in every regard, and even though I was a young boy, I still miss her to this day. Each and everyone of us, has only a certain amount of time on this planet, before our hourglass winds down, and there's simply no sand left. Today, that's the case for three grieving families,  who are enduring the most challenging of all pains that a human being can. Three young ladies with Rett Syndrome passed away yesterday. While I've only had the chance to meet two women with this condition, along with their awesome mothers, the words of my uncle at my grandmother's funeral rings true this morning. That is "with a heavy heart." 

Those families are going through such agony, pain, and will have to go through a process that's gut wrenching. Our hearts should be with them, and if you can say a prayer, it is without a doubt something that can be felt. Three was a lucky number in Biblical terms, but this version certainly is not, as there are grieving families, friends, and a vast network of folks who have been a part of these ladies lives. Now there are more questions than answers, along with that heavy heart, and the soul crushing pain that will have to be directly experienced. Life's permanence is shockingly brought to such a conclusion, but at the same time, those will have to carry forward under totally new circumstances. Its not something one would wish on anyone, even a worst enemy if they had one. In Mitch Albom's "Have a Little Faith," he delivered the eulogy for his Rabbi. During one of their interviews preceding his death, the Rabbi discussed his children's death," and how he was angry at God." Mitch asked him, "then why are you a Rabbi?" To this he responded, "because my anger at God proved His existence."

There are going to be a swirl of emotions for the families, those who know them, along with parents of children with Rett Syndrome. Anger is one of them already, but in the coming days and there's no time limits on that, my hope is that there will be some sort of peace. Ultimately these families feel pain, and our hearts should be there for their broken ones. Love them, support them, and by all means pray for them out of an abundance of compassion. You just never know, as each and everyday is valuable, and these three families need to see the support of so many around them. They will never get over this, but through the grace of God, let's help them get through.

Mom and Dads Who've Lost a Little One or Adult: You Aren't Alone

After my son passed away, I often wondered why some people kept their distance. Most of the time I really didn't care, but I can tell you, that I have discovered who my true friends are. Plus I've made so many along the way, that any losses are completely wiped away clean, along with a renewed sense of purpose and faith. I was blind for the first 34 years of my life, but now my vision while far from perfect, has improved considerably. You are going to grieve in different ways, and as long as you are not a threat to yourselves or others, don't give a damn what you have to do. It is a parents worst nightmare, and while perhaps some of my anger wasn't healthy, it was part of the process. While the Scottish temper can still arise, its much less likely to now, and quite often I literally turn the other cheek. Its not a sign of weakness, but rather gaining an appreciation for life like never before, along with realizing that each and everyone of us can be difficult at times.

Such battles of the past no longer happen. Its good being "the dude", and for the most part just chilling. This doesn't mean that I won't knock you down in a boxing ring or other athletic event, but its a change of perspective, that wouldn't have happened. Losing a child isn't something you should want or obviously have happen to you, but I can promise you, that if you move forward, not over but through, you will see with new lenses. Much of what you previously thought of as hard, becomes a laughable matter, and what's the worst somebody can do to you, take away your birthday? Its better to be forgiving, and just laugh, along with smiling more. Taking the laid back approach, and only ratcheting up when necessary isn't just healthy for you, but also this positive spirit can spread and touch others.

Recently a lady whom I've known for years, revealed to me that she lost her child many years ago. I've always found her to be one of the most compassionate, and warm individuals that I've had the grace of getting to know. All of her employees love her, as she is a supervisor of a very important operation each and everyday. Their work isn't easy, but one of her folks said it best. That was "I can't keep up with her, and her positive enthusiasm does make it bearable." I don't know what she was like prior to her child's passing, but I have a feeling, that she's changed due to this as well. There are millions of us. No, not across the world, although that is the case, but even in the United States, or any other nation for that matter. We are all brothers and sisters, and in addition to supporting each other, let's keep the positive vibe moving in a forward trajectory.

You Can't Take My Birthday Away

There are millions of us who are in the "club" of losing a child. No its not one that we ever expected, wanted, or thought "that could be me." Yet it is the reality, and while the natural order is for us to pass away before they do, those of us who've been down that road face a host of emotions. Anger, guilt, utter despair, frustration, and a feeling of abandonment in many regards. We have gone through our lives trying to be decent, when the parent's worst nightmare hits, and you lose the faith that you previously had. Yet did you really have that faith? I'm not sure I did, because mine has grown at an extraordinary level since my boys passing. The skeptic in you might be thinking "Well, you are just making up for that pain with something to cling on." You'd be right to consider that, as that was how I used to use my minimal brain powers, and I was wrong.

I won't tell you who to call God, but I believe in Jesus, and yet at the same time I don't hold a grudge against you if you worship vacuum cleaners. Its up for you to choose which road to pick, and I have picked following the guy with nails in his hands and toes. "The crosses we bear" are so true, yet when compared to what He went through, I'm thankful to learn from Him the meaning of "Turning the Other Cheek." It doesn't contrary to what I thought, and so many others believe, make you a weak human being. Rather it makes you stronger, and able to cope better with the pain you've been through, along with challenges following after such a tragic event. A church doesn't have to be at a building either, some of the most amazing spiritual experiences I've had, have been in the strangest of places.

Parking lots. With angry, rabidly foaming at the mouth parents. On the road. God doesn't pick out a building to be His temple, rather it surrounds all of us, regardless of who we are or where we are in life. This past week an immediate prayer was answered, and we'll see what the next chapter brings. There's only so much I can do, I trust the Lord as my rock, and am a better person because of it. My journey in faith has a long ways to go, but I feel much better after "letting go," and just taking the bricks being thrown one by one. Whether its someone in authority above my head red in the face yelling, what's the worst they can do, "take away my birthday?" :)

I don't know know the reasons for my son's passing, or why so many others are down this highway. I'm not sure about a lot in life, even though before, I thought I had it pretty much figured out. Its a mystery, and even though I cannot prove it, I thank God for having a sense of humor. That is what has helped me in many ways, and I laugh at things, that I previously would not have found funny, and have found new value in each and every day that I'm lucky enough to wake up. There's only so much we can control, and for the most part, that's our actions. Turn the other cheek, worship the good Lord, and trust in Him. At the same time, have fun, discover what your passions are, and just go with the ride.

A Cure for Angelman Syndrome: To the Finish Line

Its too late for many parents, as there are parents, grandparents, uncles, aunts, siblings, friends, and so many extra family that you didn't know, mourning the loss of a child with Angelman Syndrome somewhere. When Tommy was born his diagnosis was a slap in the face, as it was a wound, that so many know too well. It takes a lot to digest the news, that your child will probably never speak a word, and that in just a few years you'll probably be administering seizure meds rectally to them. Your dreams of that precious little baby becoming Prom King or Queen, along with maybe just being a happy kid on the bench of the baseball team are over. Its up to each and everyone of us to accept such news, which I declare to be like getting hit in the cranium with a fly swatter weighing a thousand pounds, but to each person being unique there are a multitude of responses.

Right now, there are probably a lot of young parents who just found out their child has Angelman Syndrome. Its going to be a game changer of your entire life, one that is going to have profound ramifications. I pray that you do not have to end up in the heavy boot category that so many of us have, which is to literally put the dirt on your own child's grave. There's nothing worse than that, but it is my hope, and there's reasons more than ever for optimism, that a cure will be found. Groups such as the Angelman Syndrome Foundation, Angelman Network, FAST, and a host of others are generating both awareness and potential treatments. Never in the world's history, have so many discoveries been made so fast, and this is due to the passion of angel families around the world. There's no giving up, or letting off of the accelerator, because I agree that the chances for a cure have increased at an impressive rate.

A lot of what's going on right now, is far past the scope of my simple Criminal Justice background, but for those whom find Biology and Chemistry fascinating, it would behoove you to go to school and become a member of the greatest scientific discovery of all time. Angelman Syndrome is the only autism spectrum disorder that can be identified with a blood test, and mice have already been given this deletion of chromosome 15, along with being cured completely. These aren't minor accomplishments, and these are prior to the recently revised brain project, that mirrors the DNA one of years ago. Scientists figured out how to do DNA mapping, with the brain study at NIH and other institutions, its only a matter of time before the curtain hiding answers is widened just a bit more.

To the parents of a child just finding out your child has this condition, my heart goes out to you, but know that you have lots of families and groups ready to assist you. Its a group collaboration, and your family will grow quite large, although it will have a lot of different last names. That's the beauty of it, as while AS can be challenging, you get to meet some of the most amazing people. Even after our unexpected terrible night in 2009, I can literally say we have been blessed to still do the same, and our entire family is grateful for the support and understanding of so many. We are on the sidelines now, but the smiles of angels carries us on, as does the hope that young people with AS today might just be cured tomorrow.

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.