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.

Wednesday, August 24, 2011

Earthquake in Mineral, Virginia: Affects the DC Area and More Just Like Seizures

The earthquake in Mineral, Virginia on 8/23/2011 was a rare event, and I am thankful that only minor injuries and damage have been reported. At the time, I was sitting in a car, and it felt as if a really strong man bounced my car up and down for about twenty to thirty seconds. Then I saw people running out of a nearby building, and I realized, it was an earthquake. A unique experience, that you cannot predict. In a way, an earthquake is a lot like seizures, that affect many. Roughly 3% of people have seizures, and they can come on at any time, without warning.

Seizures are a serious medical condition. Some have tried to write them off as a "minor issue," but there's nothing funny about them. They have caused lots of children to be in Intensive Care Units, ambulance and paramedic services to be utilized, cognitive effects, induced coma's, or in some cases death. That's right, gone forever. When you see your child, seizing up uncontrollably hundreds of times a day, there are no words that can ever be written, to describe such wretched misery. When a parent has to bury their little boy or girl, it is a crushing of the soul, that causes their hearts to be scarred forever.

So what can you do about it? Get involved. Learn about seizures, and help folks like the Vanderbilt Kennedy Center's Angelman Seizure Project. There are numerous types of seizures, and just like earthquakes, they vary in intensity and periods of duration. These unpredictable events create seismic levels of pain to families across the globe. Yesterday's earthquake in Virginia was a minor blimp. Yet seizures are not, and that is why they must be cured with due haste. Parents and their children are counting on you right now, whether it is spreading awareness, holding fundraisers, or helping those whom are contending with this issue. God bless the brave souls whom deal with seizures on a daily basis, and those who love them. Everyday they have earthquakes, that are far more painful, and lead to irreversible damage.

Friday, August 19, 2011

"Are you better off than you were a few years ago?" The Angelman Community Is.

There has been so much blood, sweat, and tears in the Angelman Syndrome community. At the same time, there have been some smiles. Its been no easy endeavor, but what in life is? Upon receiving my son Tommy's diagnosis in 2004, huge strides have been made in generating awareness to doctors, schools, counseling groups, and the general population. Is there work still to be done? Yes. However, families that have a member that has Angelman Syndrome, or friends of these families that do become family as well, have had their lives greatly enhanced by folks such as the Angelman Syndrome Foundation, Foundation for Angelman Syndrome Therapeutics, and the Vanderbilt Kennedy Center. Our family was blessed to have had a pediatrician whom had another "angel" in this practice when we got the news that Tommy had Angelman Syndrome, but others have not been so lucky. There are still folks out there that haven't received a diagnosis, which is devastating, but the chances are much better now.

Is it great to hear that your little boy or precious girl has Angelman Syndrome? Nope, it cuts to the very essence of your soul, as all of your dreams are thrown aside. Yet it is better to contend with what you know, and how you can be of the most benefit to your child. Years ago, one would have said "huh?" with regards, to finding out information about Angelman Syndrome. Our pediatrician gave us some of the particulars, a geneticist helped us grasp concepts that my wife and I were not able to handle at the time, and the Angelman Syndrome Foundation walk a thon was where I finally felt "I'm not alone." Alone is a horrible place to be, but as misery love's company, there's a lot of happiness at Angelman Syndrome walkathons. Its a place to bond, to get to know other parents, and to learn more about experiences that are often done by "trial and error." FAST has been working on a cure with folks like Dr. Edwin Weeber, and the Angelman Community as a whole has banded together through social media and other means, to become stronger than ever.

All of our hearts, should go out to those, whom never got a diagnosis for what was going on with their son, daughter, nephew, niece, granddaughter, and grandsons. Yet in 2011, a FISH test, that is able to determine if there is a deletion of chromosome 15, is readily available. There are systems in place to help families learn all they can, and all Angelman parents should have honorary law degrees, after doing so much research. Yet even more importantly, Angelman parents have a unique bond, and often are able to provide advice and support to each other. Whether its face to face(most helpful), or through phone calls, and using social media, its able to realize that there are others whom are going through the same challenges.

We still have a long ways to go, but great strides have been made. That is something that all of us can be proud of, because even though we have been tested, we don't understand the meaning of "quit." Instead, we understand "resilience" much more. The Angelman Community is fierce, one devoted group, that shows a lot of courage each and everyday. I am thankful for organizations such as the ASF and FAST, whom both do fine work, along with community and faith based institutions that have lended loving hands of support along the way. A cure has not been found yet, for Angelman Syndrome or its devastating seizures, but with the same love, and battle tested group of families, it shall one day. I have no doubt about that, and we must cling on to that hope, while supporting each other until that glorious day occurs. Rome wasn't built in a day, but we shall advance instead of retreat, march forward instead of holding our position. Nothing short of absolute victory is an acceptable outcome.

Monday, August 15, 2011

FAST must win the Vivint Gives Back Contest: Save the Angels

There is nothing in the world, that compares to getting the hug from an angel. If you want to spiritually feel closer to God, find a child with Angelman Syndrome, and get a hug from them. Right now boys and girls, young men and women, and their parents, grandparents, aunts, uncles, siblings, and loving school and church communities are counting on you. They want to see their Angels find a cure, which is a reality, as proven by the phenomenal work of Dr. Weeber. He has managed to give a mouse Angelman Syndrome (deletion of chromosome 15), and to cure it. That is breathtaking work, and all that is needed is your help, to make that mouse be a boy or girl cured of this condition forever. God willing, they will be able to walk better, talk, tell their mom's and dad's "I love you," of which so many have been waiting for years to hear. Do you take those words for granted? You would not if you are an angel parent, whom loves your child, regardless of their ability to say these words, but rather to marvel at their compassion, their love of everyone, and their steadfastness in never giving up.

It will not cost you a cent, to make a difference, as the Vivint Company has been kind enough to have a contest. If you log onto Facebook, and vote for FAST(Foundation for Angelman Syndrome Therapeutics), you are helping a much deserving youngster and their parents, get that much closer to a cure. You might end up with sore fingers from typing, but considering it only takes a couple of seconds each day, that's less likely than a paper cut from your letter opener. For some angel families its too late. There are quite a few that have lost their angels to seizures and accidents. Sadly, as we all know time can not be rewinded like a DVD, but a cure would guarantee this from no longer being the case, and could save a parent or young one from a tragedy that is beyond comprehension.

Please vote for FAST on Vivint's Gives Back on Facebook. This security systems company has been generous in helping much deserving charities, but FAST has the ability to save lives with a cure for Angelman Syndrome. There will be no rushing to ICU's, no induced coma's, no loss of life and seeing a child go to God far too early. Instead, there will be joy. Parents everywhere will be able to hear those words, they have been waiting for. That's right, "I love you." Angels will be able to communicate better, make themselves understood, and a lot of champagne will be popped on the day this great discovery is made. So please, let a parent hear "I love You" along with that hug. Show your love, by voting for FAST in the Vivint Gives Back contest. There are so many waiting for those words, and a cure for Angelman Syndrome would be a Godsend folks around the world.

Saturday, August 13, 2011

FAST Needs Support in the Vivint Gives Back Contest-A Lesson from the Colonists

Several years ago, I was in London. That is one beautiful city, full of kind folks, and so much history that I barely slept during the visit. Plus, the fish and chips, along with the pints of beer were of course enjoyed, much to the chagrin of my liver and cholesterol levels. During one stop at a bookstore in town, I busted out laughing. As you can imagine, I was the very definition of a boorish American, not appreciating the nuances of subtlety. An employee approached me, and had to laugh as well, as it was a book on the Revolutionary War. In the print, it read "King George in his royal wisdom, decided to let the colonists have their own country."

The Revolutionary War was full of blood, although not nearly as much letting was done as the American Civil War to come down the pipeline. There were lots of colonists, people of influence even, whom thought they had no chance against the British Empire, with its well trained and equipped soldiers, and sphere of influence around the globe. One of these, whom tried to sell his soul to the devil, no offense to my British friends and aunt who's a citizen there, was none other than Benedict Arnold. He is the very definition of a traitor, and his name is used to this day, to describe anyone whom turns against a cause, or uses unprofessional tactics to achieve victory.

Yet the Colonists, even with shortages of food, water, people, and smallpox epidemics won the Revolutionary War. Take that Joseph Sewall :). The Americans gained their own country, against all odds, which if Vegas existed back then wouldn't be one you'd throw money around on in the wager column. The Angelman Community, which of course is international, is an army of sorts. Yet this one is of loving people, whom believe that a cure for Angelman Syndrome is a possibility. Dr. Edwin Weeber has already found a cure for mice, would you like to go to the tables in Sin City and vote against the concept? I wouldn't, and that is why so many are supporting FAST in Vivint's Gives Back Contest on Facebook. Just like any contest, there are some that like underhanded tactics, but they shall not prevail.

What will, is the good people of the Angelman Community. Honesty and righteousness of cause, is what shall bring FAST much needed funds, from a company that is kind enough to help those who are on the cusp of achieving a "scientific shot heard round the world.". FAST, Foundation for Angelman Syndrome Therapeutics, is chaired by an all volunteer staff, parents of those with this condition, that know the meaning of compassion along with high ethical standards. It is time for a cure for Angelman Syndrome. That is why we must stay the course, as George Washington pictured here, did during times of immense pressure. If a group of "pathetic bandits" as the Americans were then called by King George, can succeed, than so can FAST in this contest with love, determination, and voting everyday.

Friday, August 12, 2011

The Importance of Vivint Gives Back to FAST Contest

The next two weeks, it is imperative that you vote for FAST (Foundation for Angelman Syndrome Therapeutics) in the Vivint Gives Back Contest on Facebook. Its crunch time, as all contests and elections are often coined, and now more than ever FAST needs your help to assist those with Angelman Syndrome, and their families. FAST has had incredible success, in funding programs that are more likely than not, going to lead to a cure for Angelman Syndrome. Wouldn't you like to fight for something, rather than sit down, and just put up the white flag? By taking a moment out of each day, actually thirty seconds or less, you can make a difference. In the Boy Scouts, we used to call this doing a "good turn." That's what each vote is, and each twenty four hour period, you can be a part of such a positive action.

If FAST wins, it will mean a lot to Angelman families across the world. Isn't it great to be a part of something special, that shall assist those who could really use your help? Angelman Syndrome is caused by a partial deletion of chromosome 15, and FAST has helped Dr. Edwin Weeber, with a mouse project. This creature was given Angelman Syndrome, and then cured of it. That is incredible, and breathtaking research, and more will be possible if FAST wins this contest. This is a once in a lifetime opportunity, to help angels, whom are known for their smiles and laughter, have a chance at a better life. Its going to, if FAST wins, provide a lot of comfort to families, whom have known of this love firsthand, and would do anything in their power to help their children, grandchildren, nieces, nephews, brothers, sisters, and friends with Angelman Syndrome.

Thank you to the compassionate folks at Vivint, for having this contest, and for being willing to offer a generous donation to a worthy cause. FAST is certainly a fantastic charity, that has stepped up to the challenge, of finding a cure for Angelman Syndrome. If you have been voting, thank you and keep doing it. For those who haven't had a chance yet, now is your opportunity to step up, and stand united with the Angelman Community that's full of love and dedication. Now is not the time for complacency, or to hold the position, but rather to advance. With each vote for FAST, dreams of so many are closer to becoming a reality.

Sunday, August 7, 2011

Seizures Affect Many: Mike Patterson of the Philadelphia Eagles Just Had His Life Turned Upside Down

Although I am not a Philadelphia Eagles fan, my heart aches for Mike Patterson. This past week, he had a seizure while on the field, and is lucky to be alive. Apparently he has AVM, which is a congenital brain vessel disorder, that caused him to seize up. This event hit him like a lightning bolt, and imagine the devastation of this twenty seven year old man. Here he is in the prime of his life, enjoying the life of being a professional football player, and then WHAM. It could be very much over. All of those years of toiling in the heat, practicing in the trenches, the wins, the losses, all gone in a matter of seconds.

He is among so many of our fellow citizens, that is affected by epilepsy related conditions. Three million plus Americans have seizures, and when you count the numbers worldwide, it is a staggering amount of people. Across the special needs families, its at a much higher rate, and that is why funding is so necessary to find that cure. While Mr. Patterson may have to hang up his cleats, and focus on a life he had never previously imagined, there are children right now being forced into induced coma's to stop their seizures. Some of them make it. Some of them, sadly go to God far too early because of them. That is why it is imperative, that the folks at places such as Vanderbilt Kennedy Center's Seizure Project, get the help that we all can deliver. It doesn't have to be much, because every bit helps us get to that goal of defeating this menace.

Today Mike is waking up to a new reality. His whole life has been changed in such a way, that it is going to cause pain for him and his family. Every dream he had of playing on the gridiron is now out the window, and I pray that neurosurgeons can help him out. Right now he is suffering, as are so many, and it is our moral duty to make sure that a cure is found. Doctors around the world are working on this issue, but the lack of funding towards this issue compared to others, is in stark contrast to what we all want. Seizures have caused so much pain. They have taken the lives of children, my own boy, and so many others have had to go down this road that has so many bumps and stabbing pain. Seizures have sprung up on people like this, and made their lives more difficult, taking away their driver's licenses and ability to live independently. I wish nothing but the best for Mike and all those who are contending with seizures right now, because this condition needs a cure, and it needs it more than ever.

Friday, August 5, 2011

A Pickup Truck and the Amish-What Do They Have in Common?

This past January, I went out to start of my pickup truck parked in front of my house, due to having some errands to take care of. Upon walking up to it, I saw that the front driver's side was all smashed up, and a few colorful words were said. I was furious, and as I noticed no note with a person's information on it, I turned a shade of red brighter than the finish on the hood. For half an hour, I seethed with anger and hatred, wanting to beat to submission the individual who had the audacity to hit my car, and at least not have the courtesy to leave their insurance policy or a phone number to reach them at. The level of rage was so livid, that I waited a half hour, before I called my local police department to report the hit and run. Pieces of a motorcycle told me all I needed to know, and after taking my information, I called the insurance company to pay $250 for some inconsiderate worthless pond scum's responsibility, so that my vehicle could be repaired.

A few years ago, at an Amish School House near Lancaster, Pennsylvania, a disgruntled milkman went on a shooting rampage. He killed a number of little boys and girls, which devasted the tight knit community up there. As many know, the Amish do not use technology, ride horses with buggies attached to them, and are completely self-reliant. They had every right to be angry, furious at this man whom killed their babies, and then put the gun to his own temple and pulled the trigger. However, they did as Jesus commanded, which is to "turn the other cheek." As we all know, Jesus nailed to a cross, said "Forgive them Father, they know not what they do." This crazed man's family had a small funeral for him, where he was buried, and these Amish parents showed up to pray for him. They prayed for the family, and assisted his wife and children. If that is not what Christianity is about, then I do not know of any better example of it.

I wish I could be as good of a Christian as they are. Turning the other cheek, especially in such painful circumstances as they had to go through, is something that I cannot imagine. While I would no doubt feel sorry for the man's wife and family, as they had nothing to do with what their husband and father did, I know for a fact that I could not do as they had. They still continue to support this family. My pickup being hit was no big deal. Sure, throwing $250 dollars down hurt economically, but I never thought about that individual who hit my car other than hoping "he better have a really bad headache after running into it." Now looking in retrospect, I should have instead thought, "I hope he's okay", and just dealt with the trivial matter that it was. Perhaps his motorcyle was ruined so badly, that he couldn't go to work, and support his family. I will probably never find him, but if I do, I will inquire about his health now, instead of just rushing to anger.

Faith is a work in progress. None of us is perfect, and my getting angry over a object getting smashed, is nothing compared to the pain of finding out your child has been murdered in a vicious, cold hearted manner. Yet the Amish showed what faith is about, real Christian values, that I have to admit have made me realize that perhaps I should learn how to "turn the other cheek, no matter if wronged." Often I think about that scene in the "Passion of the Christ", where Jesus who had been beaten for days, and hung up on nails to that cross, and think why did he die for me and all of the troubled souls on Earth? True faith.

Winc 92.5 FM Steps Up Angelman Syndrome Awareness

Radio stations play valuable parts in our community, whether they provide news coverage, or music to keep us from going nuclear while sitting in bumper to bumper traffic. One of these is Winc 92.5 FM, which I listen to frequently, due to their mix of various genres, and the fact that they have a great signal in Washington D.C. Yet, they are based out of the Shenandoah Valley, which makes that even more impressive, but they were lucky enough to get a tower at such an altitude that it guarantees a bit of a bounce with a cup of coffee each morning. Their "Facebook Friday" contests are fun as well, as every time that is on the calendar, they have hour giveaways to fun places for families to enjoy. These are usually local attractions, which are more important than ever, with gas prices being what they are, and budgets being tight.

This past week, Robert Allen, their program director was kind enough to allow me to explain Angelman Syndrome, Tommy's life, and the Angelman Syndrome Foundation with his listeners. He is a good man, and a lot of fun, and I'm appreciative that he was able to do this over the phone instead of having my truck guzzle my wallet even more than it already does. This interview was my second one on the radio, and while it is still a genre that I am not completely comfortable with, Robert put me at ease. Thank you to Winc 92.5 FM and to Robert, for understanding their importance to the community that listens to their station. Here is the interview, and its with extreme gratitude, that this event was able to take place.