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.

Sunday, June 26, 2011

WWII-What It Has to Do with Seizures

Several years ago, I visited Great Britain, and got to see where then Prime Minister Winston Churchill commanded war  efforts. This bunker was certainly not a comfortable place to reside, yet it is where he "called the shots", and also he was crazy enough to go to the roof to observe aerial bombardments. To say that Winston had courage is an understatement, although that word can best be described as "being somewhere between bold and absolutely nuts." During battles over London and other parts of Great Britain, the Nazi forces decimated large areas of buildings, supply lines, and even residential properties. It seemed like an insourmountable challenge, yet Winston Churchill's famous quote "Never, never, never, never, never, never give up," is appropriate with regards to the battle against seizures.

Great Britain was almost at her knees, due to the constant bombardment. My aunt's mother-in-law, all five feet tall of her with dirty feet, ran with government documents down the street, while explosions were going off in nearby actions. This resolve, and guts proved too much for the evil Nazi's to defeat. They never conquered Great Britain, rather they got their tails handed to them by the Brits, along with Americans and the allies. This country's buildings, some of them still show the damage, yet it has been rebuilt, and along with it stories of bravery in the face of destruction. That is exactly why, just like the American general's response of surrending being nothing but "nuts", is what would she feel about ever giving in or giving up, to the seizures that have affected so many of our loved ones.

We do not have bombs falling on our heads, for the most part, but we do have an explosive component of seizures, that very much threatens our family members. That is why we must never, never, never, never, never give up, even though the road is not an easy one. We do not have to pull out large cigars, and a top hat either, but continue to spread the vital importance of why Vanderbilt Kennedy Center's folks and others, must have our admiration, along with our support. They are grossly underfunded, and need all of the help they can get. Right now, they are doing amazing work regardless, much like the Britons did when their cities were on fire from multiple bombings. It is our time to cross the finish line, and with the new developments, such as the drugs being able to target the affected areas of the brains where seizures are occuring, we have hope. We also have resolve, and until there's a cure, we must never, never, never give up.

Friday, June 24, 2011

Ermey aka Gunnery Sgt Hartman from Full Metal Jacket: FAST Needs Your Help Now

Most of us have seen "Full Metal Jacket," as its a classic movie, that best shows what the United States Marine Corps is all about. Yet what makes this movie what it is, is that Ermey, is a drill instructor that played the part as Gunnery Sgt. Hartman. A lot of what he says is negative, and not meant for "public consumption", but he does have some important messages about life, and also Vivint's Give Back Project, with regards to FAST.(Foundation For Angelman Syndrome Therapeutics) While I will not repeat some of his sayings, some of which cause belly fulls of laughter during his instruction to the "amphibious pieces of garbage" that he calls recruits that join his beloved Corps, I will say that he'd be right with regards to the recent efforts on the Vivint Project.

Right now, FAST is not in first place. As Gunnery Sgt. Hartman would say "This is unacceptable!!! For FAST to be in second place shows that we are not working hard enough. You will not like me because I am hard, but I am fair. The more you do not like me, the more you will learn." Well, like Ermey, I'm going to "tell it like it is now", because while I have no grudges against the other fine charities, it is simply inexcusable for us to be in second place. Second place is for losers, as first place is the only acceptable place to be, and also by a large margin. I have forgotten to vote a couple of times, and as we are all not perfect, it is time that we kick to the next level until this contest is over, because nothing short of FAST getting first place should be considered a victory.

I cannot rewind the clock, as the night of November 4th, 2009, my son Tommy, age five, died of an Angelman Syndrome related seizure. There has been a "great sadness" that was aptly described in the book "The Shack". Also, there has been guilt, self pity, and also a lack of regard for others, that led to anger so great that I wish no one will ever have to go through this angst. Even with that being said, each day even if it has pain, is a blessing, and it would be a joy to see FAST get the funding from Vivint, because I do NOT WANT any other Angelman parent to go through this type of tragedy. I am comforted that Tommy is with God, but not until a cure is found for Angelman Sydnrome and its seizures, shall I rest until my last breath upon this Earth.

The other charities represented are excellent, but FAST deserves to win this contest, for one reason alone. They have found a way to work with an all volunteer staff, to partner up with the medical community, to work on a cure for Angelman Syndrome. Their funding has led to a mouse being given Angelman Syndrome, and cured of it. You say, "so what, a mouse?" Do you realize how close a mouse is to human beings on a DNA level, and with future trials on other animals and humans, this is the natural progression of how cures are discovered. One chromosome, 15, is affected with Angelman Syndrome. In turn, one enzyme in the brain is the problem. While by no means simple, FAST must win this Vivint Contest, because our angels deserve the best, and nothing short of that.

You know how we shall win this? By voting everyday, by encouraging folks whom we know, now is not the time to be bashful or too proud. We are not asking for money, we are not knocking on doors like those door to door salesman that we want to release the hounds to. Instead, we are locked in a battle, which is as George Patton called "fear holding on one second longer." Right now, FAST is in second place on the Vivint Gives Back Project. Send private messages on Facebook, rally around with your church communities, as people love to be involved with good causes that don't require a checkbook, but rather the click of a button. By doing this, they are adding votes to a organization that so rightfully deserves it, and complacency is the mother of all buttwhippers when it comes to winning.

Ermey would expect nothing less. He would say that we need to be "Change Machines" if that movie was done, in such a way to promote FAST in the Vivint Project. Its time to put on your war faces, go out there, get family, friends, neighbors, dogs, whomever has a facebook account, to vote for FAST every day. It does not matter if you get carpal tunnel syndrome from these few keystrokes, it must get done, and right here, right now. Every battle in life that is worthy of a cause, is not easy, and this one is no exception. Yet we can do better, and in order to cross the finish line as victors by helping FAST get that cure, we must do everything in our power to "turn up the volume." It would be easy to rest on our laurels, but nothing good has ever come of that, and now is not the time. Let's go get em, and make FAST so far ahead in the lead, that one even considers catching up.

FAST (Foundation for Angelman Syndrome Therapeutics):Must win the Vivint Gives Back Contest

Right now Vivint's Give Back Program, is getting heated, as it should be. This kind company has twenty finalists, charities that are all doing good works, in a online competition to see who shall get the grant money that so many of us are thankful for. While there is a lot of corporate giving in the US and elsewhere, it would have been easier for Vivint to have just cut a check, but I like what they are doing. They have allowed charities to compete for these much needed research funds, and right now the Foundation for Angelman Syndrome Therapeutics(FAST) is in the lead by just some thirty votes. While there's still a lot of time left, this does not sit well with us, who know that FAST offers a real chance for a cure of Angelman Syndrome, and has a ALL VOLUNTEER STAFF. Talk about commitment, and all of the research money going right to the cure, which has been done with a mouse by FAST's efforts.

Other charities in this voting contest our not evil, and there are a few that sometimes eclipse FAST in votes. They should be admired, as they are all helping people with conditions that need a cure, but its FAST time. Its our once in a lifetime opportunity to get a cure for Angels, and by the grace of God, with our blood, sweat, and tears, we must provide FAST this win. I admit to quoting Edmund Burke, along with General Patton too much, because they are folks that I greatly admire. They were bullheaded, never gave up, and Burke's quote of "All for evil to triumph, is for good men to sit back and do nothing," is a famous one. Take that out of context a bit, remove the evil, replace it with another charity(that's doing good but we don't want to win), and remember to vote for FAST every single day on Facebook.

In order to do this, "like" Vivint, and then add your endorsement to FAST. Its that easy, everyday you can do it. You can get friends, family, even the guy who sings to himself while walking an imaginary dog in your neighborhood everyday. The point of that is, vote everyday, and do not be ashamed to ask folks to help. You are not asking for money out of their pockets, you are not bugging them like those charities in the famous Airplane movie scene where Robert Stack just knocks them on their rear ends, you are telling folks how to become involved with just a click of a computer button. They can do this from home, work, or while drinking fancy named coffees in a wifi establishment, while hanging out with fellow beatniks. It doesn't matter, do what you can, and do not be afraid to ask folks for help. You'll be surprised, when people hear about FAST and how easy this is, they are going to thank you, and also do it. Yet they must every single day.

The way for this effort to succeed, is we must have the heart of champions. That's right, its "Rocky time," and don't make me call "Mick" his grumpy old trainer, to tell it like it is. Its now or never. This is the best opportunity for FAST to get the much needed funding it can, to deliver the cure that thousands across the United States and the rest of the world have been waiting upon. So that is why, it doesn't matter, if you live in Austria, France, Iran, New Zealand, Qatar, Russia, or Zimbabwe, you can vote for FAST on Vivint's Gives Back. Give angelman syndrome parents and families the security that Vivint provides, by voting everyday. This is our time if you click that vote button everyday, because its time to cross the finish line and find that cure.

Thursday, June 23, 2011

School Children at Little Run in Fairfax, VA Give All to Those with Special Needs

The past week has been a bit rough, as while everyday I miss my son Tommy who passed away from an Angelman Syndrome related seizure in 2009, there are rays of sunshine that far outweigh the pain. Yesterday was one of these moments, as I visited the school that became more than just our educators, but rather members of our family. Tommy was so blessed to go to Little Run Elementary, which is located in between Annandale and the City of Fairfax. Their administrators, staff, teachers, assistants, and therapists helped Tommy, and in turn greatly assisted us as well, when he was alive and afterwards. They are always in my mind and heart, so I visited them yesterday, where they have a beautiful memorial in front of the school to Tommy. I remember crying at this service, and how the rain poured down that day, which was prophetic as his love of water was second to none.

Yesterday, I smiled looking at his memorial, and the bush with red flowers that are about to bloom next to it. After going inside and meeting with the Principal, whom I deeply respect, I learned something that made the sadness go away even further. When Tommy was at Little Run, they had "Peer Helpers." These are mainstream students, who volunteer to work with preschoolers whom have special needs. Its a great project, as it is mutually beneficial, and many of the students volunteer every year. As I've mentioned before, in high school we had special needs children in the building, and I was very uncomfortable. I never harbored ill feelings or any kind of resentment, but seeing a person with special needs would make me "clam up" a bit, as I just didn't know how to react.

I found out from the Principal, that the students are volunteering as "Peer Helpers" so much, that they are simply overwhelmed by the sheer number. What a joy this is, and some of the students want to give up their free time at lunch or recess to work with a fellow youngster, with special needs. This is proof of pure, innocent love, and to say that I was touched is an understatement. We have come a long way from my days in the stone age, and to hear of children wanting to sacrifice their free time to work with a child that needs an extra hand, well that caused me to cry tears of happiness and of thanks. Little Run has always been at the forefront of programs for children with special needs, and they really are a "community school." The children graduating to middle school and further, are never going to forget this experience, and are going to be advocates for those who have intellectual disabilities.

Thank you Little Run Elementary. Once again, you've somehow managed to enter our family's life again, and in such a beautiful way. If any students from Little Run, or their parents read this, I hope they realize that they've helped a grieving father, along with students who have challenges, but whom never give up. Just like Tommy, the children who are going the extra mile to work with children with disabilities, they are true champions, and they've helped more people than they will ever know. It has been proven that mainstream students who work with children with intellectual disabilities, grow up to have good character, along with doing better academically than those who do not. That has been proven in numerous studies, along with family members by sociologists. God bless you all who were a part of Tommy's life at Little Run, and who continue to keep his legacy alive, along with making such positive inroads into so many families. You have made me smile, and I think that even though this world is sometimes a "messed up fishbowl," there's a place of refuge where compassion, understanding, and good hearts reign supreme. That is Little Run Elementary, and they should be proud of their great work, and all of their accomplishments.

Wednesday, June 22, 2011

Splash Art International: A Global Effort of Love for all Angels

Angelman Children are known for their laughter and smiles, but they are now getting recognition for their fine art work. Angels along with their loved ones have taken part, in a awe inspiring effort that spans the globe, at This moving site on the internet is proof of a loving God, compassion of parents across this planet that is growing smaller everyday, and by the love of Angels. I cannot tell you the difference between a Monet and a Rembrandt work, but I can see with my own eyes, the beauty of the paintings and photographs that are here. This effort was created by Darren Humphries and Luisa Fernanda Otero, and their dedication and purity of cause is undeniable. Luisa's son Nico, and Darren's son Elijah, have created on canvas what can only be described as innocence, joy, and kindness for all.

Darren and Louisa should be commended for this effort, as it shows another side of Angelman Syndrome, along with the importance of arts with regards to children and people whom have this condition. I will admit to a tear, because when my son Tommy was alive, he painted at school and just loved it. Like Elijah, he went to God far too early, but their legacy lives on, whether its on canvas, through people that they touched, or by the fact that "angels" and other folks with special needs are now getting opportunities with arts and recreational activities. Educators across the globe need to look at their work, and see for themselves, that incorporating arts into a child with Angelman Syndrome's curriculum, is of vital importance. It allows angels to communicate in a different way, to express what's in the very essence of their soul, and teach us all valuable lessons.

The past few days have been an emotional rollercoaster, but makes me smile. It is such a joy to look at the pictures of Elijah and Nico, to see what they've managed to create with some paint from their loving hearts. The best description I can give this effort is joy, as that's what it has made an otherwise dreary few days turn around. Thank you to Darren and Louisa, to Elijah, to Nico, and to all of the folks who've taken photographs or drawn pictures of angels. I hope that one day there will be an exhibit of these artworks, because they will tug at your heartstrings, and make you realize that there's something bigger and better than all of us out there. My spirituality has been strengthened by loooking at these paintings, and are a reminder that life is what we make of it, as it is a canvas that is always changing. With this effort, its on a good road.

Monday, June 20, 2011

Vote For FAST(Foundation for Angleman Syndrome Therapeutics) in the Vivint Gives Back Project

This morning I'm sweating. A lot of other parents are as well, as while we love the kindness of Vivint's "Gives Back" program, the charity FAST is now in second place. While I'm sure the other charity is a fine endeavor, FAST aka Foundation for Angelman Syndrome Therapeutics is top notch. This group does NOT have paid staff, rather they are a group of parents whom have children that have Angelman Syndrome, and are doing everything in their power with benevolent doctors to find a cure. Through their work, they've already found a way to genetically modify a mouse to have Angelman Syndrome, and deliver a cure. Next up, will be other animals and eventually humans. Wouldn't you like to be on the right side of history, to see what's so close, just on the cusp of the horizon, finally being resolved?

You can do this! Every day, vote for FAST on Vivint's "Gives Back" page, that is located on Facebook. This requires a few keystrokes, I'm not imploring you to sell your prized train set or comic books, but to simply log in everyday and vote. FAST was in first place, but its now dipped to #2. That's fine and dandy for generating awareness of what this kind organization does, but winners cross the finish line first, and by the grace of God and by our voting, may that happen. Yet it won't if we kick back and do nothing. Remember that Edmund Burke line, "All for evil to triumph is for good men to sit back and do nothing? " While the other charity is not evil, nor is the contest, its time to vote and get the word out that FAST is the best charity, due to its groundbreaking efforts and being so darn close to getting a cure.

I cannot rewind the clock, as I miss my son Tommy every single day. Other Angelman parents are in the same boat, as we've lost our "angels" through seizures or causes related to this condition. There's no anger, but rather resolution to see FAST cross that checkered flag victorious, with the grant money going to them to find the cure. No parent should have to go through what a number of us have, and children and adult with Angelman Syndrome deserve a cure. Its 2011, and medical advances much like technology, are moving at the speed of light. That is why I ask you humbly, please cast your vote for FAST in the Vivint gives back contest. Thank you for reading this, as I appreciate your work FAST, and am appreciative to the warm folks at Vivint for giving us an opportunity. Now let's make that happen!

Sunday, June 19, 2011

Thank you Vivint-A Company That's on the Cutting Edge of Technology Gives Back to Those in Need

Being a homeowner is unpredictable, and it makes sense to have an alarm protection system, as well as warnings about potential weather hazards. Vivint is an industry leader in this field, as they have incorporated innovations that go far and beyond anyone else in this area, and they provide solutions that are user friendly and on the edge of technology. Life is unpredictable. If you are the parent of a child with Angelman Syndrome, Rett Syndrome, or other conditions, you know of the constant stress, and pressures that you must encounter on a daily basis. Just like how Vivint brings security to our lives, they have also decided to give back to charities, that greatly help those in the special needs community. Vivint is a company with a big heart, and they deserve kudos for generating awareness of numerous, effective charities, along with supporting two that are in the prayers of many.

These would be FAST(Foundation for Angelman Syndrome Therapeutics), and the International Rett Syndrome Foundation. Both are excellent charities, that have helped many, and are at the forefront just like Vivint, with regards to finding a cure for these conditions. Angelman Syndrome and Rett Syndrome share a lot in common, as while there are difficulties, there's a lot of love from the parents of those who have been diagnosed with them. Everyday on facebook they are voting for the Vivint gives Back feature, and it has been fun to participate, and also to watch the results piling in to see who will get much needed funds for research and other endeavors. While I'm hoping that the charity called how I drive wins, whomever does is the end is going to help a lot of folks in need.

Thank you to the kind folks at Vivint. You are more than a technology company that makes the lives of families safer, but also helps families who are fighting everyday for mere survival. These families across the US and world are so underserved, and your company has given us a chance at equal footing, to make positive changes that are so needed. A lot of times businesses are portrayed for their negative actions, and its so good to be able to write about Vivint leading by example, and showing the importance of how we are "all in this fishbowl together." Please be sure to support Vivint by looking at their internet site, purchasing their products, and thanking them. Also, don't forget to vote. Each day you get a chance to vote, which is a lot more often than political races, and with tangible results that will bring progress to our causes.

An Ode to Father's: Those Who Have Special Needs Children and Those Who've Lost One

Today is father's day, and this is usually an occasion marked with perhaps a card, cigar, or a ridiculous looking tie that will never be worn. Being a Dad is the world's greatest job, but its not always the easiest, especially to father's that have a special needs child, or have suffered the loss of one of their kiddos. For those with children who have it a bit more difficult than others, my heart goes out to you. Too often we as father's focus on "what's wrong with our children," along with being angry and frustrated that we can't help our children, or explain to others easily that our boys or girls aren't going to make the baseball team. I've been there, and its difficult on the male ego, which means obviously a whole host of other challenges that go with it. Yet I hope that with a step back, you can avoid some of the mistakes I made, and realize that there's so much more that a special needs child is capable of, and that you have to be "a rock" for your family. Its not easy, life isn't, but it is necessary.

All of the dreams for your son or daughter are crushed, when you receive "the news," and not the good one either. Your hopes for teaching them to fish, hunt, play a game of football, or just get into cars are thrown out the window. Until my last day of life, I will regret not focusing on what Tommy could do, and letting this period of difficulty extend far too long. When he was born, I remember thinking " I can't wait to teach him how to go fishing." Then, when I heard of his Angelman Syndrome diagnosis, I flipped out and left the doctors office in an absolute rage. A homeless man begging for money, got to be on the receiving end, as I yelled at him "How dare you bother me now? Why don't you do something such as be a real man, and get a job!!"

I feel bad for that man, who picked the wrong day to ask me for money. While I don't think panhandling is acceptable, my response was not, and if I ever see him again I will apologize and purchase him a meal. Losing a child causes similar pain for us fathers, who don't wish to admit crying, and try to soldier on stone faced in grim circumstances. We try to put on our "game face," but behind the eyes that seem not to betray us, there is a pain, and rage fueled with suffering. It is so "against the grain" for us to bury our children, rather its supposed to be the "other way." Yet that's not always how it works, and there's so much in our lives that is out of our control, whether we want to admit it or not. Stoicism is a fine value, but sometimes you have to admit to the pain, that can drown you in self destructive behavior. I know this firsthand, because after my son's passing, I drove around town at high rates of speed, not caring for the welfare of others or myself. It was selfish and irresponsible behavior, and showed a lack of empathy for my fellow human beings.

Humanity. Do you think you are alone with a special needs child, or if you've been a father's who lost one? Nope, not at all. There are many of us out here. This is not a traditional father's day message, but remember that you and I both are not perfect. We can only do the best that we can, and if I had to do it over again, of which I have no choice, I would have focused more on the joys of a child with special needs rather than constantly worrying about the ramifications, the medical trips, the strain of stressing out about seizures and other pressures. Today is an important day as fathers, because we do fulfill a vital role in society, as well as being members of families and there for children who may give us that "title." Its a job alright, but there's no better one, even though the pay isn't so great :).

Saturday, June 18, 2011

If Tommy Can Walk, Then A Cure For Seizures Can Be Found

It is hard to believe that in July, my son Tommy would be seven years old, if seizures had not taken him to God far too early. I would by lying if I said that the past few days have been a joy, no they have rather been full of despair, as this test of faith and resolve has been a battle. My co-workers and folks I know of, do not understand my silent pain, which manifests itself in a variety of ways. There's been a couple of short tempered outbursts, along with more aloofness, and I am not ashamed to admit going somewhere to simply cry. I've had dreams about my son, and seeing a little boy with blonde hair can sometimes trigger immense pain, of which there are no words to describe it other than "soul shattering." Yet the sun is starting to rise again, because of one particular thought, along with running into a Cancer survivor who told me about her fight to survive. God puts people in our lives at the right time, and a memory of Tommy has caused a grin instead of tears.

Earlier today I drove by where he went to school, and I thought about him learning to walk in our neighborhood swimming pool. Some doctors told us, "he may not walk." Granted doctors have years of education, high IQ's, and do not wear a name tags and boots to work everyday. Yet they are people, and just like all of us, imperfect. Tommy's pediatrician was wonderful, and the majority of the medical staff that took care of him, or looked into how he was doing, were kind folks who understood compassion and that Tommy's life had as much value as anyone else's. He was Tommy, not an Angelman Syndrome child named Tommy. During one visit he even had our rather uptight neurologist laughing, because he couldn't stop laughing, and I giggle thinking about him with my parent's dog, with whom he just truly loved. They had such an incredible bond, and my parents were instrumental in getting him to walk.

The summer of 2009 was an incredible time, as Tommy was progressing quicker than ever before. From a chunky boy named "Porky", he thinned out a bit, as his mobility improved. He no longer looked like a sumo wrestler, but rather a well built, athletic machine, and my folks surprised my wife and I one night. They told us "Come to the pool." Lo and behold, Tommy was walking across the entire lanes, and the tears of joy and celebration were also full of smiles as well. He walked across the pool, in water of numerous depths, and if he fell, he'd just laugh and start walking again. Tommy at five proved a point, that he walked in the water, and in the fall he was able to walk across our living room.

A lot of thanks go to my parents, and to all of the educators at his schools, that constantly worked with Tommy. These include teachers, speech therapists, occupational therapists, and physical therapists who frankly "wore him out," but in a good way. This led to his slimming down, and while tall, he stood even higher as he made the trek across the living room. There was not a soul holding his hands as he did this, and his smile and laughter, along with the look on his face, said it all. He knew exactly what he was doing, and that his accomplishment was worthy of more than most of us face ever. I will never forget this bravery, because while he did fall down, he always stood up. A week later he left us, and my mother-in-law who was instrumental in his success, had a dream. Her parents came to her, whom passed away years ago, and said "someone is going to be taken from the neighborhood." It didn't make sense at the time, but perhaps this was a sign of things to come. His passing was and is so painful, but each day is a new one, full of infinite possibilities, and of something else.

If a young boy who "may not be able to walk," then why can seizures not be cured? The parallel to this is obvious. A cure will be discovered, and while I wish along with other parents who've lost a child to seizures that it was yesterday, who's to say it won't be today or tomorrow? Until there is a cure, we like Tommy, cannot give up. Only when the cure for seizures is discovered, can we truly take our "feet off of the throttle." Its okay to take steps back, as long as they are like chess pieces, in that we are moving them in a way that they will ultimately get a "checkmate," or in our case a cure to the seizures that have taken too many children away from their families. When I visit his gravesite, I'm often struck by the notion of how many parents have gone through this same journey, and that we are not alone in our pain. Yet we have a duty, albeit a solemn one, and that is to continue our children's legacy in such a way, that it can perhaps give the next generation a better chance. Tommy walked, and he stood tall. For a boy who "may not be able to walk," he did much more than that, and it is our duty as parents and people who love those affected by seizures, to do the same.

Monday, June 13, 2011

A Big Heart in Oklahoma-A Science Project on Epilepsy and Much More

When I was a young man, the only thing I thought of epilepsy, was that I should be afraid of it. Considering that goes back awhile, and archaeologists are still digging up fossils from that period, as a society, "we've come a long way baby." Epilepsy is frightening, but it is not something to be afraid of, as it affects over three million Americans alone. For boys and girls with disabilities, the rate is much higher. Although recess and lunch were my only two successful subjects, there's a young lady in Oklahoma who's both brilliant and even more importantly, has a BIG heart. Victoria is her name, and what she has meant to those of us fighting seizures, looking for a cure, and being there for her parents is truly spectacular. This brave young lady lives with a younger sister Nancy, who has Angelman Syndrome, which of course seizures are a component, and a brother named Sebastian.

Victoria lives a busy, productive life, and her mother is very proud of her. Recently, she did a science project on Epilepsy, that won a ribbon for its distinction, but even more importantly is educating a future generation in ways we failed. Instead of just sticking to the status quo, she made her science project(pictured above), both visually appealing as well as informative. There's so much information packed in here, and she used her first hand experience to allow others to gain knowledge on the subject, which is necessary due to the high number of folks affected by epilepsy. Victoria's project covered aspects such as what epilepsy is, pics of EEG's for those of a person without this condition and another with it, types of epilepsy, what to do in case of seizure, different types of seizures, parts of the brain that are affected by them, and the medicines being used to prevent or lessen their effects. It is an impressive look at epilepsy and seizures, and Victoria should be commended for a job well done, along with giving others a look at this condition that needs a cure now.

She has made her parents and school proud, but she also has made an entire community fighting seizures pleased as well. Its up to Victoria and young people of her generation, to take up the battle, and generate awareness along with finding a cure for seizures. She has been a "rock" for her mother during tough times, and you just cannot find this type of good character, without a big heart. Victoria, thank you for what you have done, because you are bringing the fight of your sister and so many to folks, whom had no idea of what epilepsy is or the effects that it can cause to a person or family. You are so kind, and have helped educate others on an important subject, that is now finally getting the attention it so richly deserves. As far as I'm concerned, along with a whole bunch of families, you get an A+ for your work, an A+ for your support to your family, and an A+ for your character, values, and big heart.

Thursday, June 9, 2011

105.9 the Edge, Mix 107.3, WMAL AM 630: Angelman Syndrome on the Radio with The Spectrum

105.9 the Edge is my favorite radio station in the Washington D.C. area, and its hard hitting format, has finally allowed me to give up cranking CD's or snoozing to books on them behind the wheel. Along with the Edge, I listen to Mix 107.3 for its contemporary music selection, and WMAL for its political commentary. These stations are owned by Citadel Broadcasting Corporation, and it is my distinctive pleasure to thank them, along with Spectrum Radio Host Tom Grooms. He is a "man of his word," and kept a promise to do a show on Angelman Syndrome. It would have been easy for him to forget, with his busy schedule and numerous responsibilities, but he never did. As soon as I emailed him, Tom grabbed the "bull by the horns," to have a show on Angelman Syndrome, the epilepsy that is associated with it, and also about bereavement for a parent who's lost a child. Words are a poor excuse for how I feel about his kindness, but here is the link to his show:

I was nervous doing my first radio show, yet Tom Grooms's professionalism and decency, allowed me to chill out completely. He is a genuine good soul, who cares about the special needs community, and has done a lot of shows that focus on autism. We need more folks like Tom, who understand that these issues need to be brought to the forefront, instead of a lot of the "other stuff" that seems to be overplayed on the radio and television airwaves. Without a doubt, his big heart and gung ho attitude, are a valuable resource for those of us who love somebody with special needs, or want to become involved in the fight to get better services or cure for various conditions. A classy man, and a big thank you to Tom for blazing this trail with such dedication.

The show on Angelman Syndrome is going to air this Sunday, on all three stations listed. If you go to, that is where the information is. You will have to get a cup of coffee for this early morning show, so add a shot of expresso to your mug. Also if you love some with Angelman Syndrome, or have a family member with epilepsy, let's all "like" the stations on Facebook. If you are in the Washington D.C. metropolitan areas and surrounding 'burbs', crank up the Edge. Their format is awesome, and they are the home of the classic and hard rock that you know you love. If you want a bit more laid back music, Mix 107.3 is a good choice, and WMAL 630 is home to excellent politics and news shows. Thanks to Citadel Broadcasting, and hats off to Tom Grooms for being a man of honor, decency, who's willing to help the folks in the Angelman Syndrome Community continue the march forward to a cure.

Monday, June 6, 2011

Seizures: The Numbers of Folks Affected by Epilepsy is Shocking

As a society, we have come a long ways, in epilepsy awareness. Many years ago, in the Paleolithic Age when I was a teenager, I knew that seizures were a potentially dangerous health condition, caused by abnormal signals to the brain. Also, I was aware that a person who is having a seizure should be given space, to make sure the enivornment was safe, and to check for objects that they could choke on. I have seen seizures with my own eyes, and they are frightening. One of my buddies has had them, and I consider him to be a brother. Another person in my life who's had seizures, that I love dearly, is my son Tommy. Seizures ultimately caused his life to end far too short at age five, yet his legacy lives on, as does his ability to stand up strong.

There are over three million folks in the United States alone, that suffer from epilepsy related conditions. Most believe the number is higher due to undiagnosed cases, or the sometimes stigma that goes along with it. The stark number on the autism spectrum is startling, as a lot of children and people on it, are affected by seizures. Even if you only count the United States, with roughly one in one hundred people, think about the size of that group if it was an army. Now, let's go around the world and add some other numbers. Do you think three million is a lot? Add China, India, and other countries with large populations. Then for good measure, throw in some folks from the Cayman Islands and Gibraltar. You are going to have probably close to 100 million people across the globe, that are affected by epilepsy. Now that's a heckuva an army, let General Patton have that, and kick some serious tail with a group of soldiers in that number. The "People of Walmart" wouldn't stand a chance.

Epilepsy affects us all. Perhaps its a family member, a friend, a neighbor. It can have devastating effects, such as what happened to our Tommy, which is by no means an isolated incident. Look up the term "SUDEP", and see for yourself. Even if it does not take the life of your loved one, friend, or neighbor, consider the damage seizures do to them. Their cognitive and mobility will be affected, their body will be physically drained from the seizures, and they are going to require a lot of rest. Many hospitalizations and ICU visits every year, could be avoided if seizures were cured. For those of you who are thinking cost vs. benefit, that should indicate enough of a reason to hop on board with the folks at Vanderbilt University's Kenndy Center and other research institutions, to defeat this menace.

Sunday, June 5, 2011

Foundation for Angelman Syndrome Therapeutics: FAST-Colin Farrell's in the House

There are so many people in the Angelman Syndrome family, that are hoping for a cure, to this condition that is caused by a deletion of chromosome 15. While angels are a joy to live with, due to their magnetic, happy personalities, infectious smiles, and laughter, it would benefit them and their loved ones when that medical breakthrough is discoverd. Notice the "when" and not the "if," because that is for a reason, as the work of Dr. Edwin Weeber and others, with animal projects have proven that Angelman Sydnrome can be created and cured at the genetic level. Ten years ago, "if" would have been appropriate, as some of the most intensive research has taken place in the past couple, due to the dedication of doctors and groups like FAST. For those of you whom are not familiar with FAST, it stands for Foundation for Angelman Syndrome Therapeutics. Based out of Illinois, and run by an all volunteer staff that are all parents to a boy or girl with Angelman Syndrome, they've got the passion and the decency to never give up.

It is too late for my son Tommy, who sadly passed away from a seizure related to Angelman Syndrome in 2009. This is the same story for other parents of Angels, who miss their little ones, more than mere words on a blog could express. Yet there are thousands of parents and family members across this globe, which is becoming smaller everyday, that hold out the hope for a cure for Angelman Syndrome, which causes major developmental delays, such as those related to mobility and speech. FAST offers a chance for these parents, as the organization is broken down into a Board of Directors and Scientific Advisory Board. This unique partnership, along with its volunteers, makes it an "effective machine," for new possibilities, including the cure that's around the corner if the necessary funding can be discovered.  When you think about the cost versus what it would mean to parents and children everywhere, it is a "drop in the hat," and I cannot stress enough the importance of donating to FAST whatever you can.

Funding goes to help discover new treatments for the cure of Angelman Syndrome, along with helping angels get better medical care. That is the proverbial "win win", and the passion that FAST has cannot be denied. Parents of angels are running races, generating community events, all to help out this efficient organization. Even Colin Farrell, whose son has Angelman Syndrome, has chosen to work with FAST because of this level of dedication.  For more information, go to their internet address at There you will see a group that is committed to a cure, and you can reach them at 1-866-783-0078. Look at their site, and I am sure that you will be impressed by their endeavor, because a cure for Angelman Syndrome is a reality.