Interested in a cure for seizures? Here's where you can immediately help.

Feel free to share any of these posts. There are no copyrights on any of them, they are for anyone, anyplace, anytime for whatever reason. All of my love, from a man who just simply misses his son, and believes in the decency of people around the world,

Mike
**To reach the author of this blog Mike, the best email account is a silly one, but goes right to my phone. Technology is so cool. Its toiletoctopus@gmail.com. Thank you for reading this blog, and its been such a good project, in that it has helped others and me as well. May you all live life to the fullest, we have no idea when it shall be our last "dance."

With much love, I am proud of the Angelman Syndrome Foundation. If you can help them, and families with this condition, please consider donating to them at www.angelman.org. They are on Charity Navigator, and have done a phenomenal job over the years, on the awareness and research side.

Saturday, December 31, 2011

Morning has Broken: 2012 Holds Many Possibilities

"Morning has broken, like the first morning,
Black bird has spoken, like the first bird.
Praise for the singing, Praise for the morning,
Praise for the springing, fresh from the word.

"Morning has broken is without a doubt, one of the most peaceful songs ever penned. Although it was published years ago, it was Cat Stevens who really put this hymn on the map, and I am forever grateful. It has been a song that has help during painful moments, when despair seemed to be all that was around,and hope seemed bleak. This and Sarah Chang's "Air on G String", where she makes the violin cry, do provide solace for these times. Each of us in our lives, faces loss, and the key to it, is accepting it no matter how horrible it is. While the traditions and songs might be different across the globe, the feeling is the same, especially when it involves a child. Yet, even the loss of a parent, brother, sister, aunt, uncle, friend, or anyone who has had significance in our lives, is going to lead to feelings of profound sadness. You never know how much you love someone, until they are gone. That is when you will understand the true depth of love, and while we each have a day, the key is enjoying everyday as a blessing.

2012 is upon us, and as we say goodbye to 2011 in the rear view mirror, it is a time for thinking about what all of us should be doing in the new one. I make the same promise ever year, and that is to stop using a certain word, because it is broken as soon as the alarm clock goes off on Jan 1st. Yet, at the same time, while it is just another day, sometimes it is good to go to a quiet place, and just reflect on what the previous year, and times before it have taught us. I used to scoff at the thought of "stopping by to smell the flowers," but going on a hike, and just enjoying the gifts that have been bestowed to us, make it even more worthwhile even with the various challenges. A quick bike ride through a forested area, or lacing up the boots to take it all in, provides some respite from pain, from stress, and also is just a place to find that little bit of tranquility.

Each of us should do that from time to time. A college professor of mine, whom I still greatly respect, used to say "mind, body, spirit." It is so very true, and I am thankful for his lessons, along with his humorous approach to life. He never said it, but I have a feeling that he had seen a lot in his lifetime. What will 2012 bring? Who knows, but whatever it is, the key is just doing the best that all of us can. Life throws us all kinds of challenges, it is how these are responded to that matter. I'm very excited about this year, as I hope it is going to bring amazing scientific discoveries, possibilities that were never conceivable being a reality, and a lot of fun at the same time. In honor of Tommy, who is missed, and all angels who's families are grieving right now, you are not alone, nor shall you ever be. Each morning begins anew.

Thursday, December 29, 2011

A Night at the Ice Arena: Angelman Syndrome and Other Conditions


Earlier this afternoon, my wife and I went ice skating. Make that my wife, as I was pleased to watch her have fun, and not end up as some wreckage that would be run over by the Zamboni machine. As a rather physically ungifted specimen, I smiled seeing her grinning, and also by the huge crowds that were out on the ice. It brought back a lot of memories, as it was the same ice arena that I used to skate at, as an awkward high schooler, wearing my cheesy vintage Washington Capitals hockey jersey. I took a bit of a hike, looking at the former "pro shop" that doesn't sell any NHL merchandise, but rather skate equipment only now, and the same hot dog machine that appears to have the same chicken and other mechanically separated parts on it, from back in the mid 1990's. They are now vintage hotdogs, due to that age. The locker area stunk of that same eau de Right Guard that it always has, and the video game machines, have been upgraded to more modern titles. Yet, in many regards it is the same. There are still those folks in orange jackets helping skaters who have taken a tumble, and the spirit of being able to accomplish various skater stunts, remains in the air. Four and five year olds are able to fall down hard, and yet bounce right back up. It must be nice.

A bit of sadness crept into my mind, as we had visited my son's grave earlier in the day, and I looked at all of the children skating around, smiling and having fun. I couldn't help but smile a bit, but at the same time, I wondered, "if we do not find a cure for Angelman Syndrome or seizures," this generation is going to suffer as ours has. There were several hundred people in attendance, the majority of them being young children, and no one wants any of them to have to bury a child to a seizure, or have a child with Angelman Syndrome, who cannot tell them what is bothering them. A group of teenage boys were wooing young ladies in the rink, and I had to laugh at their attempts, as it was like looking at the past. No doubt, with the same methods that my friends and I used, they were out of luck with them from all appearances. We do not want these young men aka nutty creatures, or young women who do have common sense, to go through the pain that so many have endured. Giles Cory was right in the "Crucible", when he said "more weight." That's what is required of us, and we are closer to the cure than ever before. It will not be overnight, it certainly has not, but the work of folks like Dr. Philpot and Dr. Weeber, and so many more continue. The pharmaceutical companies, and research institutions, are on the same page compared to years past, so what do we do in regards to this?

First of all, we support each other. Angel families must not let "people issues" or "politics," or whatever it is get in the way of our love for each other. I have disagreed with many angel parents over the years, and that is fine, as I do not hold any grudges whatsoever. None. In fact, I feel the pain very much of angel parents, right to the heart, when all they want is to hear their child say a word. I had no understanding of this until recently, although my two year old is saying, certain words that might not be the best. There was a moment with the sports section, that caused both a frown and a around the corner smile, and I want all parents of children with AS to hear that. Even if its "that" word, that will be a major step forward, and a joy. I also pray and believe, in what Steve Jobs said in his book. He was a visionary, although not the easiest man to work for. Yet his quote of "We are now entering the time when biology and technology" will come together, that is happening at research institutions. It is speeding up the process of what was once deemed impossible, and now is the time, to remain focused, focused, and even more focused on that. In the movie, "Eyes on the Prize," if you have seen this classic, you will understand that very tenet.

Today was a success. My wife did beautifully on the ice, as it was her first time in years, of lacing up her skates. I enjoyed taking pictures, and trying to find the keys to the Zamboni machine, for a test run of sorts. Also the laughter of young people brought back some good memories, much happiness, and a reminder that it is now our time to cross the finish line. It was a whole mix of emotions, but the main one was that these children, should never have to experience either the devastation of a diagnosis of Angelman Syndrome, seizures that scare parents, sleep patterns that cause parents angst and much stress, fighting school systems tooth and nail, contending with services that may or may not be good based upon where you live, or the burying of a little girl or boy. Children and adults with Angelman Syndrome are beautiful just the way they are, and each parent when a cure does become available, will have to decide if they want it or not. I am not going to judge anyone's decision, but continue to make that an option, along with the destruction of seizures. It is a promise, that must be kept. This is a sacred one to God, that day after meeting a man who not only survived the hatred of Jim Crow, growing up without a father and having to make ends meet, but whom also lost a child, and represented the road map that must be carried out. As I walked out of the ice arena, my sleeve was pulled up to scratch an itch. There was my ink, that says exactly what matters surrounded by an angel, "Faith and Resilience."

The Tommy Ross Memorial Fund: Maryland Recreation and Parks Association


It has been proven, that children with special needs, greatly benefit from recreational opportunities such as therapeutic horseback riding or swimming. Quality of life is what it is all about, and there are many families, who cannot afford these activities, due to having to pay for medicines, specialized equipment, and legal services to advocate for their cherished boy or girl. Here is a way to help these fighters, and their champions out by donating to http://www.mrpanet.org/docs/MRPA%20TRMF%20application.pdf. This is the Tommy Ross Memorial Fund, which my father Tom Ross and the Maryland Recreation and Parks Assocation, created to help those who want the best for their children. I am proud of my father and this organization, and to all of their kind people, who have not only established this but donated to this great cause. The night this was established, upon my father's retirement, was a moment that shall never be forgotten. It was an emotional night in many regards, as Tommy is greatly missed by our entire family, as he passed away from an Angelman Syndrome related seizure in November of 2009.

Yet what MRPA and my father have done, is in many ways, continued Tommy's legacy. He learned how to walk in a pool with his "Pop Pop", and it was an incredible night in the summer of 2009, when my wife and I were surprised by this. There is no doubt that this walking in the pool, led to his being able to walk across the living room, the week before he went to God. Too soon no doubt, yet he did it. So what can be done to guarantee other children with special needs, are given an opportunity to do the same, to not only make them happy but also provide smiles to grandparents, parents, uncles, aunts, siblings, and friends? By making a tax deductible donation to http://www.mrpanet.org/docs/MRPA%20TRMF%20application.pdf, you will help a person with a disability get a chance to flourish. If that is not beautiful, I do not know what is, and therapeutic activities are of great benefit to all whom are able, to participate in them.

Sometimes it is hard to visit the pool Tommy walked in, for the very first time. There is a picture of my wife and I walking him through the front gates, a few months prior to his passing. It hurts so much to look at that, yet at the same time, it provides a bit of hope. There are other children out there, right now, who could use that extra hand, so that they might be able to walk, sit up stronger, or just let them have some fun. If you can help this fund, you will not only help the current generations of children, but so many more, including family members who have the dream of an extra step of progress made. This is one way, that guarantees them, a chance at that. Just like Tommy, each step means more than words can ever express.

Wednesday, December 28, 2011

Sun Tzu and Seizures



"Opportunities multiply as they are seized." Sun Tzu, although he lived years ago, has been studied by every professional military and paramilitary organization, for the very reason that what he has wrote is correct, with regards to combat operations. His writings, most commonly quoted from "The Art of War," have resonated with not only sailors, soldiers, and others, but should very much so with those who are fighting seizures. Those whom are waging combat against these, along with conditions such as Angelman Syndrome, CDKL5, Dravet's Syndrome, Rett Syndrome, and others, must incorporate his tactics, through mainstream media sources, but also through other efforts. It has to be a multi-tiered approach, much like a chess board, in that you have to have your pieces lined up before you strike. Right now, that battle is going on. There have been casualties, whether it be lives lost, dreams crushed, or financial woes due to constant medical issues that have caused a lot of pain. Yet now we live in the time, when all of us, across the globe, are able to stand united and say enough.


General Patton and in more recent history David Petraeus, are students of Sun Tzu. They have used various methods of everything from deception when necessary, to building relationships, and also bringing in their enemy to the same table. We are at that stage now, as it is time to defeat seizures, and this can only be made possible if we band together. 2/3rds of epilepsy are unknown. 1/2 of 1% of U.S. medical research money goes to seizures. That is unacceptable, and it is time to go on the offensive, whether it be through political pressure at the election booth and being involved in your community, using advantages that we have such as free radio time through FCC laws for public service announcements, the media, blogging, or social media, such as Facebook and Twitter. This is much in line with what Sun Tzu proclaimed, as the more we ping away at seizures, the more opportunities shall be reached, and from there we can have a victory over this menace. It is our enemy, and while it would nice if a magic bullet could stop them, we haven't reached that point yet. However, with the newest developments in technology, whether it be IBM's Watson that is being used for medical research, or other techniques of using supercomputers to configure mathematical equations or do beta testing without harming a human being, we are now in the prime position to cross the finish line.

Yet it won't be, if we rest on our laurels. Rather, we must what we can, on multiple fronts to get to what matters. That is results of course. Nothing else matters, and the methods to get there don't matter, whether they are good, bad, ugly, or a combination of all three. We must keep plugging away, as the new laser technology and less invasive procedures hold promise, as do numerous devices being provided via grant money from organizations such as the Epilepsy Foundation of America. There are other developments, at the molecular level that have occured at facilities such as UNC Chapel Hill and others across the world, and pharmaceutical companies are now involved in a lot of the research. No, they are not all Mr. Burns from the Simpsons, but rather they stand to make profits from treatments that work, and if they figure something out, kudos to them, and their stock portfolios and profits will reflect on that. It is almost 2012, and it is too late for some of our children, other family members, or friends. Others suffer from debilitating seizures, and it is our moral obligation, to do everything possible to improve upon their quality of life. This is our time.

Tuesday, December 27, 2011

The Stop Seizures Now Blog: International Baby!


Coming up on the year mark, its hard to believe that this blog, has reached people across the globe. We really are becoming "smaller, closer" each and everyday, and I want to thank everyone who has read this, spread this, or contributed to it being possible. There are no words but thank you, but they are meant with all of my heart. The facebook group "Suck Feizures" is coming along, in our war against seizures, and we are just getting started over there. Other efforts including a ski trip, a winery fundraiser, and a trip to NIH(National Institutes of Health) are planned, and we shall continue to all do individual efforts in our community, that help our cause. That is to eradicate seizures once and for all, whether partnered up with the Vanderbilt Kennedy Center Angelman Seizure Research Project, the Epilepsy Foundation of America, or other allies and connections we've made along the way.

This year has had some exciting developments in the Angelman Syndrome and seizures fight for all, yet we must not lose our competitiveness, our passion, and our dedication to seeing these defeated. It is our time, so we must continue to trudge in the foxholes, and keep fighting away. It doesn't matter what age we are, or what country we are from, but rather that we are determined and united on this front, and giving what we can, not what we cannot, in this battle that is multi-layered and on many fronts. Where do readers from this blog reside? All over the world, and although Blogger is great, there are some statistical problems, with regards to gathering information on which country. However, this is the best effort, with that in mind. Here are the top ten countries, who have read this the most by order of "hit counts": United States, United Kingdom, Canada, Australia, Germany, New Zealand, India, Russia, France, and the Philippines.

Yet its not hit counts or anything else that matters. Wherever your residence, continue to fight seizures. There have been articles from this blog read in Argentina, Brazil, Chile, Greece, Indonesia, Iran, Gibraltar "the Rock", Spain, Japan, Malaysia, Morocco, Algeria, Peru, Mexico, Israel, Jordan, South Africa, United Arab Emirates, Sweden, Nigeria, South Korea, and Singapore. Thank you to all, and if your country was missed, blame Google for that, and sorry for not alphabetizing them, but that would be work :). So what does the next year hold? More blog pieces by various authors, involving conditions such as Angelman Syndrome, CDKL5, Rett Syndrome, and others, along with Generalised Epilepsy, and how seizures affect folks, and exactly why we must win this. It is too late for some, and we must move with haste for those who need the help right now. Other blogs to be rolled out include the upcoming ski trips and charitable endeavors, and 2012 promises to be an exciting year. Thank you everyone, and may your 2012 be full of hope and let's knock down some doors in the process.


Mike

Tommy's School Bus: Much Love


I will never forget the first day, of seeing Tommy go off to school. All of us were apprehensive, as that bus rounded the corner, but "Porky" was ready to roll. He had a wonderful bus driver, and a kind assistant who reassured us, as all members of our brood was there on that warm autumn day. Even the dog. It was hard to believe that our Tommy, was going to get Early Intervention Services at a local school's preschool program, that worked with children with special needs. Tommy's diagnosis of Angelman Syndrome, which was caused by a deletion of chromosome 15, didn't stop him from the excitement of getting on that bus every morning. He would beam a huge smile when it came up, and he loved to go up on the ramp. It was fun to watch him going up in his wheelchair on that, and just see the joy. It was a little less fun, when the moving ramp didn't work, but that was a shared joke that we had with the bus drivers and assistants. There were a few times, that Tommy had to be brought by car to school, due to something in the lift's mechanism from acting up.

These bus drivers and their staff were so kind. If Tommy was sick at school, they would always bring his wheelchair back to us. Working in an area where he was, I often saw these drivers, and they all became family, just like the school. I think about my son a lot, as these memories provide solace, due to him going to God far too soon in 2009. Sometimes I still see the same one that he used to ride. Its a mix of emotion, although I take it as a good sign. It falls a lot into that Clint Black song "State of Mind's" lyrics of "Aint it Funny how a melody can bring back a memory." So very true. The other day I was walking in a school building, and saw this Thomas front. It was impossible not to stand by it, look at it, even touch it. I felt compelled to take a photograph of it, and while he is deeply missed, the joy of him going to school provided a lot of comfort by seeing this.

Monday, December 26, 2011

The Angelman Walk: The Importance of it All

This is going to be my eighth Angelman Syndrome Foundation Walkathon on May 19th, 2012. It is going to be both joyful and painful, but much more of the former, as a hug from an "angel" means the world. The first walk in 2005 was an eye opening experience, as I was still in shock from my son Tommy's diagnosis of Angelman Syndrome(http://www.angelman.org/) in the previous November, and not sure what to expect. I cried a lot of tears, but at the same time, had a better understanding of what we were contending with. There are a lot of walks across the United States on this day, and depending on where you are, one should be within reason. We were blessed to have been only fifteen minutes to our first one, although it has moved a bit, its still close enough to get there easily enough. Getting to meet other people, provided a lot of relief, in first of all knowing "others have dealt with this." Its a huge weight off of your shoulders, and seeing younger and older "angels" as children with a deletion of chromosome 15, showed tangible results to how physical therapy and other services could be helpful.

Our whole family would get ready for every ASF walk. There was a finish line, some entertainment, educational materials, and most important of all, connections to be made. It is a lot of fun, and although each location across the U.S. has different activities, the key of course is hoping for the weather to cooperate. Every year has been the case, and some of my family members have chosen to jog the course, as we walked it. Our boy Tommy had fun at these events, and I'll never forget him and one of his buddies, grabbing at each other's chewies during the walk. Each angel crosses the finish line, whether immobile or otherwise, and parents, grandparents, siblings, cousins, and friends cheer. It is something that all in their lifetime should attend at least once, because I have a feeling that if you go to one, you will feel that you've just got to return. There is a lot of support here, and for a parent who has just received a diagnosis, this is where you can meet your "extended family," that you shall become close to.

Of course, the Angelman Syndrome Foundation's Walk is a fundraiser, and there's no minimum or maximum to attend. The last few years have been successful, and now it is paying dividends, with Dr. Ben Philpot's research getting much needed funds at the University of North Carolina Chapel Hill. His work with Angelman Syndrome, is without a doubt the largest yet, and has been featured in Nature, which is of course among the most respected scientific journals. The odds of a cure have been greatly improved upon with his recent discoveries, all of which are FDA approved, and parents of this generation and others need this hope. With each walk, and also each donation, I am honored to say that it is going to a well deserved organization, that is doing everything in its power to find not only a cure for Angelman Syndrome, but also provides support for families who really need it. This is even more important, considering how "spread out" the community is, with Angelman/AS being only one in every 15,000 births or so. At the walkathons or at http://www.angelman.org/, you can find information about services that might be available through your town or school, and find out what works best with regards to therapies until Dr. Philpot and the work of others continues on, to just deliver jaw dropping results.

My son will not be with me this year, nor was he there in 2011, or 2010. Tommy's last walk in 2009, I do not remember much of it, other than a lot of family from out of town came. We had a good time, and Tommy crossed that finish line, walking with assistance. It is very helpful to still go, as while he did pass away in 2009, due to an Angelman Syndrome related seizure, I feel obligated to be there, from the bottom of my heart. 2010 was brutally difficult, as I sat out in my car afterwards, just numb and completely upset. Yet last year was, of course filled with tears, but of the joyful variety. The Walk Coordinator asked me "Would you volunteer for anything?" My response of "anything you want," turned out to be a blessing. He is a wonderful man, and had me as the "Kids Entertainment", which is something that just seemed to be "Are you kidding me?" at the time. Yet he was right, as we had a karaoke set up, children, angels dancing along to the Justin Bieber music that has not been listened to since last year. It was a lot of fun, but the best part about it, was the hug from a young angel at the end. There are no words that can express my heartfelt thanks to her for this, other than a continued promise to be at each and every one of these, until that cure is found. 2012 will be an exciting year with this new research, and whatever Walk you are at, you shall find a lot of love, a whole bunch of support, and families who know you very well.

Thursday, December 22, 2011

Dr. Ben Philpot and the ASF=Perfect Team


The Angelman Syndrome Foundation at http://www.angelman.org/, has always had a special spot, in the hearts of many parents, families, and loved ones who have a child or friend with the condition named in this charity's name. Angelman Syndrome, which is caused by a deletion of chromosome 15, occurs roughly in 1 in 15,000 or 20,000 births. That is at least the best guess, but there are thousands of people whom have this condition, and we must do all we can to help enable them. Dr. Ben Philpot at the University of North Carolina Chapel Hill, may have just been the first to deliver the first real concrete steps, in research for improvements or a cure. How can a child with smiles and laughter not be perfect? This is very true a valid argument, and its for each parent, each family that has an angel in their life, to decide what is best for them. Recently, Dr. Philpot discovered that  topoisomerase I inhibitors, these are anti-cancer drugs, can bring back dormant genes to life. This could very well lead to a cure for Angelman Syndrome, other conditions on the Autism Spectrum, and is the most exciting research to date on all of these.

It is incredible what the Angelman Syndrome Foundation, parents, families, and angels have done to make this a reality. Dr. Philpot and his team, and all of those who've been involved in this, should pat themselves on the back, for a job well done. While the work is far from over, the fact that these drugs are already FDA approved, should certainly bring human trials in a safe manner, up to speed much quicker than if they were not. So bring out that University of North Carolina Tarheels hat, and wear it with pride, because the Angelman Syndrome Foundation, has delivered upon a grant, that organizations hundreds of times its endowment amounts, have only dreamed about. It has not been an easy ride for many. Angels have been lost along the way to accidents and seizures, or there have been injuries due to mobility and other issues caused by this medical condition. Angels generally can speak but only a few words, if any, and this has a direct affect on their personal safety.

Dec 21 2011 was the official release from the Angelman Syndrome Foundation, of this great news, that was also published in Nature Magazine. For those not familiar with this publication, it is among the most respected scientific journals that can be found. Ask any scientist, medical professional, and the consensus will be a complete "thumbs of approval." This work has not been easy, whether it be the staff and volunteers who have given countless hours wearing multiple hats, or people doing all that they can do, to make sure that their angel has the best possible life. These are exciting times, and this very much follows what Steve Jobs said about "technology and biology coming together like never before." We must continue, the Angelman families across the world, to stand united. This is our time, and all the blood, sweat, and tears are now paying dividends. Thank you to all who have been on this battle, and this opening shot of sorts, is going to lead to even more discoveries ,for all that have been out on the front lines.

Tuesday, December 20, 2011

Special Needs Children-Stickers Do Help First Responders



If you have a special needs child, what are you going to do when, not if you are in a car accident? That's right, when? Statistics show that in most areas of the United States, and in other parts around the world, that you will be in a car accident every 4.5 years. Some of these are mere fender benders, but sadly some of these are wrecks that can lead to traumatic injuries or worse. http://www.etsy.com/listing/88725438/alert-fireambulancepolice-of. At $6 plus shipping, wouldn't you like to have some "peace of mind," when you are involved in an automobile accident, especially if your child/young adult has a condition like Angelman Syndrome, or others, where their verbal abilities are limited? It does not matter whether you are in a rural or urban setting, with regards to accidents, or if the police, firefighters, and paramedics are paid or volunteer. What does is with regards to the proper triage, and in the case of a child with conditions where a person might not speak, move well, or have seizures, it is imperative to have them sent to a facility with the best possible "CRASH/TRAUMA" team. These decisions are handled at the scene of an accident.

A 5"x5" bright yellow display sticker, placed on your back car windows, makes a lot of sense. That color of course is one that is going to capture the attention of a first responder, or good samaritan in some cases who's a civilian, and might just expedite the process to making sure the right treatment and equipment is used in rescue situations. Knowing what you are dealing with, rather than what you are not, is paramount when in these cases. At only $6, plus minimal shipping, and with discounts for more items from http://www.etsy.com/listing/88725438/alert-fireambulancepolice-of, you can alert citizens and the authorities alike, when you have a automobile accident, that you have a child, or adult with special medical needs that is going to require another forms of medical attention. This well constructed and designed sticker is a brilliant yet necessary consideration, with regards to these types of situations, and its another "safety net," that should be in your arsenal.

How about the reliability of http://www.etsy.com/listing/88725438/alert-fireambulancepolice-of? Perfect. You will not have any problems here, and Tami the propreitor, is a fantastic parent and loving mother, of a child with Angelman Syndrome. Yet what if your child doesn't have Angelman Syndrome, but a condition with movement difficulties, is non-verbal, and contends with seizures? Well, there are plenty of other diagnoses that involve all three of these, so this sticker can be helpful for children that fit this category as well. Do not wait until you are in a wreck. We all hope not to be, but there is a saying from "Grumpy Old Men," that is appropriate for such a wish. Therefore, it is important to order this highly visible sticker, that can help first responders save time, and perhaps also save a life. Think about the Boy Scouts Motto, "Be Prepared." This falls right into line with that, and all it takes is a red light accidentally being run, someone texting while driving, or just a series of events to happen, that can disrupt everything in mere seconds. By ordering these safety stickers at http://www.etsy.com/listing/88725438/alert-fireambulancepolice-of, you can have greater peace of mind, and help out first responders when, not if that accident occurs.

That Extra Chair at the Christmas Dinner Table


It is so hard to lose a child, and a lot of parents, are going through that right now. Losing a child happens to all people, regardless of who they are, what religion they are, or what condition their precious girl or boy had. Yes, it is 2011 and we are blessed to have modern medicine, and devices that do help prevent such a tragedy, but much like the sun rises in the east, and sets in the west, a child is going to die everyday. Make that many, and to those whom have recently gone through such profound sadness, my heart goes out to you. As the father of a child lost, I know that we handle our grief in different ways, but the result is the same. There's something missing, and no matter what, none of us will ever get over the loss of our children. Yet we shall get through it, and this time of year is particularly difficult.

That Christmas Tree is missing the presents of your little one. There is an empty chair at the table, where you used to watch the eyes, light up when you brought out that Ham or Turkey, or perhaps mashed potatoes or squash. It can be a crushing feeling, yet when you look at that empty chair, think of all of the empty chairs that are out there with you. True, you might not be able to see them, but they are there. If you could have wings or x-ray vision, you would see this is very much the case. It is my sincerest belief that all children go to Heaven immediately, that there is no waiting period, unlike the rest of us that might have an encylopedia set thrown at us. They are no longer suffering, it is us, and as parents that is our solemn responsibility. It goes against the grain for a child to die before a parent, that adage is so true. Yet, at the same time, our children are not in pain, not weeping, not going through the motions of "what if," and "why didn't I?" And that is alright, when you think about it. I am comfortable that my son is not the one in pain. Do I suffer every moment of every single day? Nope. There are tears, that cannot be denied. Yet there are also smiles.

The first Christmas was very difficult without Tommy. I do not know what this one will be like. There will be some tears, there have already been, but there will also be smiles. That empty chair will be there. Yet look at it, and think about your little girl or boy, and the happy memories that accompany the holidays. Be grateful for those moments of bliss, and while it is necessary as part of the grieving process to cry as necessary, also be thankful at the same time. To those who have recently lost a child, this is going to sound ridiculous. In fact, it might make you a bit mad, sad, a whole combination of emotions, but those who have been down this path for awhile, understand these concepts very much so. It takes time, each day does get better, and while there are setbacks and upward trajectories, the main thing is to hold the love of your child, and not turn it into defeat. Instead, carry your life with the painful lessons that you have learned, and turn them into acts of kindness to others that are going through hard times. You might be surprised, because while the pain never totally goes away, these acts help you and your human spirit carry on, until that day when called home.

Thursday, December 15, 2011

Hipperbibs-Its Cool to Drool-"Stylin' and Profilin'


http://www.hipperbib.com/index.html. Do you have a child with special needs, who you want to help with one issue? Drooling. Yes, for those who have conditions where this is an issue, how about some fashionable ways, of making the drool "cool," and also fashionable? Hipperbibs since 2007, has been empowering children and parents around the world. Its not only kids in the United States that are wearing these high quality, good looking accessories, but rather boys and girls from the" stiff upper lip" United Kingdom, the "I went to a fight and a hockey game broke out" Canada, or those "running from the bulls" in Spain. These are all over the globe, and it doesn't matter which country you live in, what condition your child has, but rather would you like your child to have a device that helps with drool, looks cool, and might have a chewy attached to it?

The owner of Hipperbib, Susan Winfrey, is an incredible, loving mother to Ian. He is a handsome young man, and like other kids with Angelman Syndrome, or other conditions such as Rett Syndrome, Mowat Wilson Syndrome, Dravet's Syndrome, Cebrebral Palsy, or anything else that can lead to drooling, each human being is valued. Each girl or boy deserves to be treated with dignity, and Susan and her loving efforts, have helped parents from a host of countries do just this. Whether its Brazil, or soon to be the Rock of Gibraltar, that's right, parents in Gibraltar, you do rock pardon the pun. You can get Hipperbibs, wherever on the globe you are located. These cloth accessories are machine washable, and they have snaps that allow them to be easily put on your child, along with the new Infinity bibs that are more durable than a Cadillac from "back in the day." Each one is affordable, hand designed and sewed, made with complete love and customized for your child's needs.That's right, even your teams can be represented. Wouldn't you love a Boston Red Sox or Dallas Cowboys, or any other team for that matter, on a bib? Starting out at $7.50, every ten you buy, there's one free. How often can you find that kind of deal? Keep searching, but the spot is hipperbibs.

From her family to yours, you can rest assured that at http://www.hipperbib.com/index.html, you will find a wide array, the selection of hipperbibs, chew products that allow your child to better concentrate on school and other areas of life, is a "one stop shopping" type of place. You do not even have to leave your living room, as you can order online, from the comfort of your couch. How cool is that? Read the testimonials and see for yourself, as parents of children with all conditions are more than pleased. In fact, they are thrilled, and just by going through the patterns, the designs, and the options, this is a way to pick up something that you and your darling child will love. The quality, along with the love producing these, and their price makes them attractive for any time of year, and climate as well, as you can have one that covers only a bit or more as needed. The folks at Chevy, Nissan, and Porsche wish they could have this kind of showroom, and there's no reason you should have to be hassled by a tweed shirt wearing salesman. Instead, there's no pressure, you just go on http://www.hipperbib.com/index.html and look around. Susan is always available for questions about these, and she is more than reliable. What you order you shall get, and she has been deeply touched by hearing how appreciative, her customers are of her dedication to such a beautiful cause.

The best part about Hipperbibs, is that you have a parent, who understands the shoes you are walking in. While Angelman Syndrome is what Ian has been diagnosed with, Susan's love not only extends to him and others with this condition, but anyone whom could benefit from products that help with drooling issues and chewing types of behaviors. That counts for a lot in this world, which isn't always easy, but it is more so to be connected with someone who's "been there, done that." Susan certainly has, and Hipperbibs is an example of how, 1+1=2 came to fruition. Love. This is a result of that, and she has a loyal customer base, family that has become family, for the reason that her heart and her products carry both of them at the same time. She could have just made a few designs, that would offer drool protection, but instead she has gone the proverbial "extra mile" in making so many, that parents from all corners of the globe will find one to fall in love with. Your child will look great with one of these, and her vast array of ways to help make them more fashionable, is exciting and does prove that "it is cool to drool." For more information check out Hipperbibs at http://www.hipperbib.com/index.html. Remember buy ten, get one free! These reversible bibs are made with love, and Susan's customers have become family.

Wednesday, December 14, 2011

Willi's Ski Shop in Fairfax, Virginia Gets It




There are times that we all lose hope, that we all get so frustrated with what life has thrown in our direction. It can be anything, but a lot of stress can be relieved on the ski slopes. I would like to personally thank Luke and his staff at the Willi's Ski Shop in Fairfax, Virginia. While "Mother Nature," has been a pain this winter, not cooperating with those who love to hit the slopes, the Mgr and his staff don't "play with my emotions" like Smokey did to Big Worm in the movie Friday. No, instead they provide excellent service, and share a passion for skiing, along with being very interested in generating enthusiasm for epilepsy awareness. Luke and I have talked about the Suck Feizures version, that is hitting Big Boulder on February 24-26th 2012. The encouragement and his kindness have meant a lot, and while there's still not a ski lift to the store, there is a lot of just good people down here. These folks understand the love of skiing, snowboarding, and just the concept of being outdoors, and what it means in a spiritual sense.

A big hat's off to Luke and his folks, who are fine representatives of the sport of being "winter warriors." I have always been pleased, as has my wife with how they treat customers and provide excellent information on everything from ski's to a good jacket. Yet, what really makes the difference is their enthusiasm. It is contagious, and in a good way, as they aren't giving out the flu. Instead, they immediately knew of how helpful ski resorts were with paving the way for those with special needs or epilepsy related conditions, and they are very much a part of the process. This winter weather must arrive soon, because the ski resorts and those who just love to hit high speeds or crash into trees are, just waiting for this opportunity. God willing that shall happen soon, but I would like to thank the fine people at the Willi's for being bold, for not being stale like so many ski shops, and understand that this sport is more than just being on pieces of material. Instead, its about what comes from the heart, and they are kind to those with epilepsy and very supportive as well. Be sure to visit their location near Fairfax Circle, and get your ski's, boots, and perhaps that helmet to protect your chrome dome if that is an issue.

Tuesday, December 13, 2011

Happy Birthday Suck Feizures!


It is a bit early, but I think we can pop out the champagne a bit, in saying "Happy Birthday" to Suck Feizures. This is a facebook group, that is more than that, it is a family of people whom have seizures, or love someone with them. Each and every single member of "Suck Feizures" does not pay any dues, as they already have enough in their lifetimes, and this will probably not be a 501 C charity, due to the fact that there are already established charities we can get behind. Whether it is the Vanderbilt Kennedy Center, Epilepsy Foundation, or others that are all four stars or higher in the Charity Navigator rankings, much work is to be done still. However, the first year has led to some exciting breakthroughs on Suck Feizures, and what started out on Dec 25 2010 is now 1370+ good souls, working together to battle seizures head on. Already projects have been completed, to help with research, make connections, and build a solid rock bottom foundation on what we can all build upon.

The folks of Suck Feizures are spread around the world, making up every background. Seizures do not discriminate, and neither do we. There is love, and that is how the war on seizures is being waged. We miss the casualties among the way, but yet we continue to stand tall, up front and center, even if there are tears coming down our faces. That is no sign of weakness, rather of a determination that cannot be bottled up, and it is the key to getting researchers the awareness and the funding that they so very much need. It is simply unacceptable, that in 2011, only 1/2 of 1% of U.S. medical research is devoted to epilepsy related causes. Morally reprehensible, and that is going to be switched to a much higher percentage, with our efforts and resilience. Many members of Suck Feizures have lost a loved one on the way, yet they continue to fight. Others contend with seizures that get in the way of them fulfilling their college or employment dreams, or have led to children being hospitalized for weeks on end. Yet none of these people is giving up, which besides the spirit that comes from up above, is proof of the relentless human spirit that just not know how to put the brakes on. There's no cashing in the chips, rather there is a "it is our now time" attitude, and indeed it is. We are now entering an era when social media, other technologies, and biology and medical advances are moving at blistering speed. These are great, but it is our responsibility to take the lead, and put a human face, our pain, all we have experienced, and lay it out good, bad, and otherwise.

2012 promises to be even more exciting for Suck Feizures. We are doing our first ski trip, that is going to be held at the Poconos Resort of Big Boulder Park in Pennsylvania. It is due to the dilligence of members, of partnerships with other causes, that events of this magnitude are possible. On May 27 2012 there will be "Epilepsy Awareness Day" at Hillsbourough Vineyards, one of Virginia's best rated wineries and our members and others shall be there that day as well. Also, a tour to NIH, in Bethesda MD is tentatively scheduled for this spring/early summer, and more events including guest sermons, television appearances, and radio station shows are in the works. There is no giving up. If you want to be part of a facebook group that is "lean and mean," yet shows love, passion that truly emanates from the heart, "Suck Feizures" might just be where you want to be. Yes, the name, the purple sweatshirts and the black t-shirts that say this might be a bit too much for some, but seizures have been too much for a lot of people. Its time we kick them to the curb forever, and one day Suck Feizures and other groups, will no longer have that name. Instead it will be "We Beat Seizures," and that day will be when we forgo the cheap champagne, drink the good hooch, and have a damn good cigar to celebrate a victory that so many have dreamed of. Yet, we must not rest on our laurels, we must not dream, as this is about results until that very day. Suck Feizures and Happy Birthday!

Vanderbilt Kennedy Center-The Angelman Seizure Research Project's Dream

Did the egg come before the chicken? Perhaps. That old adage has been used to describe a lot of events in life, and it is time for children with Angelman Syndrome, to have the perfect medicine combination, that is going to stop them from suffering from numerous seizures, or worse. Death. That's right, its the five letter word that nobody likes, but it is a reality. It has happened to numerous parents of children with Angelman Syndrome, and it must stop right now. There are no words to describe this pain, that parents whom have gone through this, and there are more than we know, have to endure. Our hearts should be with them, and instead of looking away, we should look right at this topic.

"People die everyday." These words were mentioned to me the first time I did CPR on somebody, and I am grateful for them. I was shaken up afterwards, but the statement is true, even with our world class medicine. Yet, there will be no giving up, despite the tears, the passion, the questions, anything. Instead, there will be a continued climb, that will look like a stock quote that is doing well, with of course some proverbial bumps but a forward trajectory. Vanderbilt's Kennedy Center in Nashville, Tennessee is one of those places, that families with an angel should be grateful for. We are blessed to have a researcher with an angel, and a Angelman Seizure Project that is, a work in progress like all of us. Yet this team is working on something that isn't sexy, but rather practical. That is a medicinal combination, that will stop non stop seizures in Angels. There will be less milestones crushed, parent's won't be stressed out having to watch their girl or boy whom they love, having seizures for days on end. And those parents, whom have gone down the road of kissing their child before that coffin closes, shall never have to again.


How do you get involved? Simple. Donate to the Vanderbilt University Kennedy Center, through their online giving section. Here you will have to type in "Angelman Seizure Project" under other, which is going to eventually change. If it means a 10 hour drive down to Nashville has to occur, it shall, but regardless what matters is the work of Dr. Haas and staff, that are doing everything they can, even with limited funds and time. They must get what they need, and it is up for us, each and every single person, to bring them what they need. It is not an insurmountable goal, but rather a challenge, and so far its already one step closer with people donating to this most benevolent of causes, through the online site, hearing a sermon, wonderful, compassionate people designing shirts, buttons, stickers, and the Angel Quilt Project, that is both painful and beautiful at the same time.

We owe it to children with Angelman Syndrome, to help them not have seizures anymore. While there are a whole host of fronts going on, as this is a war, one must be the seizure angle. No more, no more. If we do not stand up, and stick to our guns, climbing together through this war zone together, than all those who have battled prior to us shall have fought for nothing. "Its always better to fight for something than nothing." While I forgot whom said that quote, it is accurate in this case, and we must continue, to not give up, to look at these angels whom we love so much, and on the multiple lines, do what we are doing. It is time for the school of the Commodores to get this medicinal combination down, so we can take the next step. There are parents crying today, hoping their child with Angelman Syndrome can stop seizing up. Other parents are so worried, "Is this the time?" Unacceptable this is, and for these reasons alone, it is imperative that we get the Vanderbilt Kennedy Center's Angelman Seizure Research Project, what it needs, now. This is our time, it is a moral obligation, and we must through the tears and the pain see this work bear fruit.

Saturday, December 10, 2011

Volunteering: The Reality of Charities and Such

The vast majority of people worldwide, believe in "service above self," which is something that all of us should be thankful for. It is amazing what connections are made at such events, and I am not going to name but a few charities that I have worked with/for, however it is put, that is semantics and nothing more. Each of these charities had different missions, but were to help others, support a cause, or cure a condition that countless amounts of people want. It is not time to discuss how many hours were put in, that is between God and I, and few efforts have been loud, but rather in the trenches. That is how work gets done, it is not glamorous, and I do not care if I'm speaking at an event, a chair on a particular board, or cleaning up balloons or having to tolerate Justin Bieber songs for hours on end. What matters is making connections, doing a good service, and leaving this world maybe a little bit better to the next generation. Perfect? Nope, that isn't going to happen on any realm on Earth, and there are a lot of things, that are simply out of our control, regardless of our position in life, status, income, etc, etc.

Charities do the best they can. Not all of them have the resources of the "big guns," such as Susan J Komen or the American Heart Association, two fine ones that are gigantic. When you get down to the "nitty gritty", there are only a limited amount of funds, and the key is being effective with your resources. Most charities do have paid staff, I never have been, and it is necessary, regardless of what size of your funding is. I have worked closely with paid staff of several organizations, and they do phenomenal work, and the key theme seems to be "quiet faith." They spend hours, and go far an beyond the 40-50 hour work weeks, that are already enough for any of us. These folks are called, emailed, and making constant connections 24/7, and we should be grateful for these passionate individuals, who's work is not always glamorous, and in fact can be quite painful.

Ducks Unlimited is the charity I am going to mention. It is a fine one, that I was on the board of a chapter for, and saw everything, from top to bottom. I had the key to all kinds of information, and was involved in planning events. Most of our fundraisers, were effective, for one reason only. They were at spartan places, often we would choose a church that a member had access to for free or a minimal fee, and our cost ratio with regard to our banquets, it was very tight. Even when we got steep discounts, the rate of return was not enough to sustain our organization. The amount of money devoted to advertising, logistics, and then other issues such as liability insurance, and other factors was astronomical.  Considering DU has been around for years, I was shocked by the small amount made by banquet type of events. They were a lot of fun, and we had a great time. Yet, where we made our money, was through other sources. If we had just stuck to banquets, DU and other charities would simply be out of what they do in no time. They were good for publicity, and it was fun to party, there is nothing at all wrong with that. In fact, that is actually fun, but with regards to the cost ratio, it was atrocious. Our main source of funding, aside from members were businesses, other foundations that we had cooperation agreements with, and alliances that pulled funding together.

I have been mad at one point or the other at charities I have supported, worked with, for, etc. That is okay, it is passion, and that can lead to beautiful results. Yet the key is not getting angry longer than fifteen seconds. Okay, thirty seconds is fine. Then take a step back, a deep breath, and realize that no charity, foundation, organization, what have you is perfect. There's no such thing as a 100% score, but financial stability and a track record over years are important, as is solid leadership that has conducted numerous scientific experiments with this funding, via efficient methods. There are no easy answers, especially with regards to organizations looking for cures, whether it be the American Diabetes Association, the American Cancer Society, or any other. This becomes even more difficult when its broken down to no disrespect,"small fish," that must operate with diligence that dollar for dollar, they can equal out the playing field a bit more. The Angelman Syndrome Foundation is doing that, and so are others. The key is not playing a game of checkers, but rather of chess, in which you set up your pieces the best way possible even in these circumstances.

Thursday, December 8, 2011

Suck Feizures Ski Trip 2012: Rocking the Purple


Ski resorts were among the first large facilities, to incorporate and downright encourage, those with special needs to "hit the slopes." There are adaptive ski lessons at a lot of them, and they were vital, for the gains that families with a girl or boy with a big heart have today. I first want to thank them, because while I must continue the journey with a heavy heart, it is a joy to participate in the Suck Feizures Ski's 2012 trip to Big Boulder Resort in Pennsylvania Feb 24-26th 2012. It is going to be a joy to connect with folks met before, as well as others, and "red solo cups" are going to be a part of the mix. This is not a fundraiser in any regard, but rather an effort for and by loving parents, who either have seizures, or love somebody with them. There are going to be folks wearing beautiful Suck Feizures Ski's purple hoodies, as this color denotes epilepsy awareness. The folks at Big Boulder have been helpful, parents in this group have gone the extra mile, to make this event happen.

We shall fall and stand together this weekend. There will be some soreness afterwards, but it is going to be a lot of fun on the slopes. The Comfort Inn at White Haven, PA has been kind enough to work with a loving parent, to make sure the rooms could be affordable, during what is peak season. This is in addition to the willingness of the Big Boulder Resort and the Big Boulder Tavern, making it even more of a possibility for folks, to just get together, and have some fun. That is important in the battle against seizures, because while fundraisers are a necessity, coming together and falling with each other on the bunny hill is as well. It shall be done with love, together, and there will be a lot of folks "rocking the purple," and showing support to the 3% of folks around the world who regularly have seizures. This is even higher in the special needs community, and one in ten of us are going to have a seizure. Many lives have been lost, with regards to a condition called SUDEP, and the pain epilepsy has caused, cannot be measured on any scale. For those whom contend with it, or love someone that has it, each time we go down the slopes, we hope to make you proud.

Would you like to go? It is a public event. You can either go to the facebook group Suck Feizures for more information. Nobody bites there, unless you want us to. Its a group of friendly and funny people, that despite years of heartache and quite a few whom are missing someone due to seizures, just do not understand the meaning of quit but rather of do. Our name is harsh indeed, but seizures are not laughing matter, and that is why we must confront them by helping the charities that so far have been, and continue to ramp up on those efforts. Those are ongoing, and there's much more to come down the pipeline, including a winery Epilepsy Awareness fundraiser event, and also a tour of NIH.(National Institutes of Health). So yes, this weekend is about fun, so please do roll out on Feb 24-26th 2012. In addition to skiing, tubing, snowboarding, falling on our butts, there's going to be arts and crafts, and ice cream social, a free raffle, and fun for all generations at the hotel, and of course the party on Saturday night. A room at the Big Boulder Tavern has been provided, with a view of the resort, a live band will be playing, and a lot of red solo cups, that's right, Toby Keith style, shall be part of the itinerary. Designated drivers are in place, and the key is to have fun, although getting up the next day to ski is going to be interesting. For more information, check out Suck Feizures, and let's rock the purple while finding that cure.

Tuesday, December 6, 2011

Dr Elizabeth Kubler was Right. Steve Jobs, his Batting Average was High Too.

"Nothing happens by coincidence." Truer words have never been spoken, and these were by Dr. Elizabeth Kubler Ross. "Biology and technology are going to come together, in the ways that my generation was introduced to computers, to develop cures for a whole variety of treatments." Steve Jobs. So how on earth can these two polar opposite personalities, who have passed away to God, be somehow connected? Steve Jobs was known for throwing tantrums, calling people multiple conjunctive adjectives in one sentence, while Dr. Ross was bringing the compassion of end of life care, and an approach to dying to so many of gentle means. The fact that they are both dead is not part of the first part, although today I thought about both of them as I sat by my son's gravestone. In the rain, the pain did not go away, but neither has the hope.

I first want to congratulate FAST, the Foundation for Angelman Syndrome Therapeutics.(http://www.cureangelman.org/) They are bringing so much excitement to families who love someone with Angelman Syndrome. Their compassion is very much appreciated, and their zeal and quest for a cure is admirable.  On December 10th, that's right, next weekend, you can watch parts of the recent FAST gala on NBC. For others, youtube or other sites might be helpful in this. At the same time, the ASF(http://www.angelman.org/) , otherwise known as the Angelman Syndrome Foundation is doing exciting work. There is going to be some thrilling news in January, that is going to pardon the pun, rock the "foundation" that all of us have ever believed. January is going to not be a cold month, but one full of warmth, and passion. With that business aside, I'm going to share a personal story, and date myself a bit, more than the few grey hairs I have left on my head. Grey hairs, are truly a bald man's best friend.

Think about what Dr. Ross said about "no coincidences," and what Steve Jobs said about "Technology in Biology." Keep those in mind with the work of both the ASF and FAST, but also in regards to our war on seizures. If seizures were a person, there certainly wouldn't be anything left, as parents, family members, and those who have them, would put a foot up their ass, to say it nicely. Yet that time has come, and a lot of it can be traced back at human history. As polio was cured a long time ago, and other ailments along the way, we no nothing of value happens overnight. Yet when you look at history, with a long lens, let's look back to Apple Computers. That's right, Steve Jobs's company. I was remembering playing on the Apple IIC, back in the mid 80's, and how baseball used to be "press a for hit, b for bunt, c for slam, d for stand". There were no images, just words saying what happened, in that horrible green font. Steve Jobs would use a stronger statement, with a certain four or five letter phrase. How about that Odyssey system I used to play on, a precursor to Atari? The squares that represented racing cars were great, sarcasm intended. How about that clunky cellphone that was the size of the nuclear football, that has to chase the President of the United States around, or having to connect to a phone to get on the net? Remember those wait times? Good luck with fast streaming media on that.

Now, medicine is getting a boost, at the molecular level with technology. Computers, not by coincidence, are now responsible for much of the research, and are a helpful tool to humans working relentless hours, for a cure for conditions such as Angelman Syndrome and seizures. In fact, this work is very much related, and is the key to it all. Computers have allowed for the unlocking of DNA sequences, and various mysteries such as therapies that are going to serve all of humanity. The best part is, it is for a reason. Do you not think we are getting ahead quicker than ever, has no reason? Of course not. "No coincidence," Dr. Ross is completely accurate. There is a reason Jobs had such a "high batting average." No coincidence on that either. Now it is up to us, each and single human being, to now march forward to these cures for Angelman Syndrome and seizures, hand in hand, because the gene associated with this condition holds promise for other conditions, including many on the autism spectrum.

My son is missed. That rain led to more of it, that was released from my eyes, but I shall not give up. Not until my very last breath on earth shall I, and today I am even more hopeful that seizures are going to be cured. It took a prayer that led to a call, as the answer that I've been searching for, has been discovered, and soon will be made for public consumption. January 2012 is going to be a month to remember, as those of us in the Angelman Syndrome Family, and all other conditions that are on the autism spectrum, and so many more, are going to be very pleased with the news that is forthcoming. It is too late for many of our children, our loved ones who have been affected by seizures, and those whom have had Angelman Syndrome, and its host of other components that lead to sickness, injury, or death. Yet you have all remained steadfast, united, and dedicated to the cause. For that reason alone, along with what Dr. Ross and Steve Jobs have proclaimed, we can soon celebrate the future that holds more than we could have ever imagined. It is a beautiful one, and now is the time.

Wednesday, November 30, 2011

A Message to Parents Missing Their Little One During the Holidays


It is so painful to be by the Christmas Tree, or the Menorah without your little boy or girl, isn't it? That empty chair at the table, the hole in your heart, that just seems to always linger with you, not quite leaving you at peace. Your child is, but your soul is churning with all of those memories, both good or bad, in the time that you shared with them. I am a little over two years since the passing of my boy, and I am not going to run away from Christmas celebrations, but it is hard to think about, "what if." Yet, the harsh reality is my son is gone, and there are so many other people, that are in the exact same position. They are hanging up Christmas Ornaments that their child loved, or perhaps was made for them, by someone special, such as a grandma or grandpa. You dread pulling out that box, with those decorations in it, knowing your heart is going to skip a beat, and the walls might just come crashing down upon you again.

Yet they don't have to. Those tears are fine, and if they are needed, they must be shed. At the same time though, its up to you to find what makes you satisfied. Is there such a thing as complete happiness? Last time I checked, nope. There is satisfaction, and this comes from several sources. One, is are you content that you are making a difference to someone else's life? If you are, then you should be satisfied, and it doesn't have to be anything big at all. During the holidays, reach out to someone in need. It could be as simple as giving a homeless person a sandwich, putting a couple of dollars in those red kettles that appear at every corner, or just letting another kindred soul know that you care about them. Two, think about those memories, but think about them in this way, would your child who you miss so much, want you to suffer year in and year out during these times? Honestly. Dig deep, reflect upon this for some time, but I am betting, and not being a gambler I don't roll the dice, your little boy or girl, wouldn't want you to constantly be in pain during these holiday periods. Instead, focus on the joy that they brought you, and share it with others. That is the ultimate gift, and it is satisfying both for you, and the person that you've touched through the legacy of your child.

Christmas and Hanukkah, and other holidays have been overcommercialized. Its okay to be irritated about one thing, the stores having related displays up after Halloween. The next time you see Santa Claus on November 1st, as part of a blow up display full of that hot air, deliver a knockout punch :). Its a tough period no doubt, but hold on to those happy memories. Yes, there is an empty chair, and empty spot, where your little one used to be there during these special times. Yet they still can indeed be, cherished moments, and this year while I put my son's decorations up on our tree, there was a lot of thoughts among family members. They can share their's if they like, and I hope that they will. When looking at Tommy's decorations, I now know he is with our loving God, and that while its okay to cry, at the same time, its important to remember what he did, and let his brother and others know about what he was able to accomplish with his time on Earth. That alone, is able to bring up some joy, and yes there are tears, but most of them are of the festive variety.

Monday, November 21, 2011

The Day my Boy Died. The Music Didn't Stop, The World Didn't Stop Moving. Our Hearts Skipped a Beat.


Having to do CPR on your own five year old son is unfair, but it has happened to me, and countless other parents, whom contend with epilepsy related conditions. I do not want your sorrow, rather what I desire a cure, so that no other parent, shall be placed into this situation that could only best be described as a parent's worst nightmare. It is true that my Tommy's heart stopped, yet cars continued to fly down the highway, as the ambulance we rode in, made its somber ride to an ending that was already written. Music continued to crank out of the angry commuter, going in the opposite direction, probably irritated that an ambulance was further delaying his trip home after a day of work. Tommy's wings were gained, and the pain of our family, friends, and so many who knew him brought so much anguish, crushing defeat, and an emptiness that no one should go through.

No parent should have to receive a death certificate of their child. I've got Tommy's in a closet in our house. Its not looked upon, because while I know he is gone, as the coffin closed on him and all of his happy smiles and laughter, his spirit lives on in all of our hearts. His younger brother, will know all about him, the picture of his hand print brings both tears and smiles. It is proof that he was and still is a part of our lives, and plenty of visits to his plot under a tree, remind us of his passing on that terrible night of November 2009. Sometimes it feels as if it was yesterday, but most often its as if, this was from another lifetime. There's before Tommy, with Tommy, and after Tommy, but yet his legacy carries on every single day. That twinkle in his eyes, and even though he never said a word, you could see the joy in his expression, that was nothing short of beaming when he was happy. His arms would flap up, which we called "doing the Tommy," and Porky certainly walked out strong, standing tall and walking unassisted.

What's the future going to bring? I don't know other than, it will be carrying on, and not giving up ever, for a cure for seizures. There have been so many children lost to seizures, so many grieving parents, or so many young adults who've never woken up, after experiencing a SUDEP event. As we close out Epilepsy Awareness Month, its important to learn new information everyday, whether we are a doctor, or someone who just wears a white coat with a stethoscope. Your position in life does not matter, nor does your ethnicity, your age, your religion, but rather your character. Each human being is to be valued, and you have each and every chance to make a difference in this combat, which is what we are engaged in. That's right, there is a war on seizures, as just like soldiers have to endure, there are casualties, whether it be milestones delayed, cognitive abilities impaired, or the worse of all death. We are all going to end up in a coffin one day, and that's okay, since the old joke of "don't be so serious, no one gets out alive" is so very true. The reason that some groups have you sit in a coffin, is for a good reason, and its not meant to be pleasant. Rather, its to say, "You have a limited amount of time, to accomplish your life's mission."

Sometimes its hard to figure out what that is, but listen to your heart, and consider times for reflection and prayer. You aren't going to get zapped by lightning to understand what this is, unless you are out on a boat in a lake during a thunderstorm, but rather the hints are subtle. The wind that blows over my son's grave, and jostles the glass decorations hanging off of the tree, is a signal of sorts. Its peaceful, and while many tears have been shed there, the sound is tranquil and is a reminder that there are no guarantees in life, except being able to be of significance to another human being. Tommy was able to do that, even limited by his Angelman Syndrome condition, and inspired a whole family, that didn't just have his last name. We each have unique God given talents, and we also have things that we might not be able to do. That's okay, someone else can help you with "the slack." That's why we are connected in so many ways, and now with the advances in social media, technology, and medicine, now is the time for a cure for Epilepsy. I was stunned to learn the other day, that less than 1/2 of 1% of U.S. government medical research, goes to this condition, which affects one in ten of us in our lifetimes.

It is time for that to change. You got it, the time for the music of epilepsy being relegated as a second class concern, is no longer going to be that anymore. It is going to require pain, even more than all of us who have epilepsy, or have buried a child or loved one to it, have already experienced. Get ready to make a stand, because silence or waiting for a handout, is a defeatist strategy that has never won any front. Whether it be the Civil Rights movement of the 1960's, or the overthrowing of dictators who treat their fellow countrymen as nothing but pawn pieces, this is the time for all of us to move into the checkmate position. You can be an element of change, a harbinger of developments, step by step. Its not going to be one of us, but rather all, and with our connected approach and dispelling of ego's, we can get it done. For you Tommy, and all whom have gone to God far too soon, and to all whom experience seizures or love someone with them. We will succeed. The world is going to stop moving, for our strength in numbers, and the commitment of our hearts.

Tuesday, November 15, 2011

Big Boulder Resort in the Poconos, PA Feb 24-26 2012: Suck Feizures Trip


Suck Feizures. Yes, that name is harsh, but for those who have lost a child to seizures, watch their little girl or boy go through hundreds of them a day, or contend with them on a daily basis, that's not too strong at all. In fact, it might be too kind. Yet those who deal with epilepsy directly, which all whom love someone or have this condition do, deserve nothing more than to find that cure that we all know is possible. Look at how quickly technology, social media, and medicine are coming together right here, and right now. It is meant to happen, and in order for that day when we can all pop the champagne, and fire up those high quality cigars, we must first organize even further. That's right, just like combat, although this one is of love, its time to put some boots on the ground.

February 24-26th 2012 that shall be happening, at Big Boulder Resort in the Poconos area of Pennsylvania. They have been kind enough to help the facebook group "Suck Feizures," that supports each other while also funding research against seizures, get out and about on their beautiful slopes. 3% of the world's population deals with seizures, and one in ten of us will have one in our lifetime. That's a lot of people, and sitting by idly waiting for a handout, is not in the best interest of those with those medical condition, and is certainly not the attitude of Suck Feizures. Instead it is one of determination, of love, and an unyielding resolve to make the next generation never have to face the pain of epilepsy. Its time for that word to be put in the history books, and God willing it shall be, as we do not give up, ever. Big Boulder Resort has been more than helpful in getting a lot of folks together, many whom are severely disabled with conditions that have epilepsy as a component, and making this event possible. It is with profound gratitude and thanks, that several hundred people, many of whom haven't taken a vacation for years, and want to meet others on the same path, shall be able to enjoy such fellowship on the slopes this weekend.

Are you going to be a Big Boulder Resort in Lake Harmony, PA this weekend? Rock the purple, by wearing a hat, jacket, or perhaps a scarf of that color. That will let so many, whom have never given up, even as milestones and multiple hospitalizations have been required, know that you stand with them. The Suck Feizures Group will be staying at the Comfort Inn, at White Haven, PA, which has also been helpul, and celebrating at the Big Boulder Tavern on Saturday night. On Friday night, we shall have a "meet and greet" ice cream social, with children and family friendly events, all generations are a part of this weekend, that will bring a lot of loving souls together, who shall see that they are not alone, they have family that they never knew they had, and that together we shall through all of the tears, also have some smiles along with the hope that we are doing the right thing. Thanks to all in Suck Feizures, whom are making these activities, including a free raffle possible, and for the kind folks at Big Boulder Resort for starting the first of an annual event. Let's go rock the purple!!!!

http://www.dcski.com/articles/view_article.php?article_id=1311&mode=headlines

The Road to Shambala: Toby Keith and an Old Song with Meaning Bring Cheer

"Wash away my troubles, wash away my pain
With the rain in Shambala
Wash away my sorrow, wash away my shame
With the rain in Shambala [...]
Everyone is lucky, everyone is kind
On the road to Shambala
Everyone is happy, everyone is so kind
On the road to Shambala [...]
How does your light shine, in the halls of Shambala?"


Toby Keith is certainly a man of strong opinions, and his country music, seems to be either loved or disliked, with little in between. However, there's no denying his talent, whether its been songwriting over the years, or that voice of his that is so very distinctive. While I'm still waiting for him to do a cover for "My Maria," because of that voice, he recently put the cover of "The Road to Shambala" on his Clancy's Tavern CD Deluxe Pack. I had never heard of this song, but instantly fell in love with it, especially on a spiritual sense. While singing along to it, I had the feeling that this had more meaning than the words, and upon doing some research, that is indeed the case.

There's a lot of controversy what Shambala is. Whether its from Buddhism or some other form of religion based out of Tibet, or from a Sanskrit background, it's "all good." The main thing is you can feel the love from this song, and its much like faith, in that God wants us to find happiness, even though we are certainly challenged every day. In fact, sometimes every minute. To the poor motorist who had to sit next to me while singing along, with my voice that would get kicked off a church choir, I apologize to you. Getting caught in the moment, those spontaneous times of joy, this song seemed to bring them with playing it, even stuck in traffic that was moving at less than a mile a hour. What's your joy going to be? It can be anything, and the key to finding it, is knowing what makes you happy, and just enjoying it for what it is. This doesn't have to be something fancy, like an all inclusive vacation to the Carribbean, but rather what's in your heart.

Each of us, has to face an abundance of challenges in life. Its what we do when faced with them. All of us have pain, all of us have joy, and all of us have in between. Yet through faith, anything is possible, along with putting on your shoes the right way, and just enjoying each day regardless of what it throws at you. Its how you "soldier up," that determines the outcome, although of course there are times when we don't have our hands on the steering wheel. Yet, even in those times, its our strength of character, the human spirit that is no doubt resilient due to a loving God, that matters the most. Along with a poor commuter, who has the patience to put up with a bald dude who can't sing a note, finding so much power in a song on the back end of a CD.

Friday, November 11, 2011

November Epilepsy Awareness Month: Rock the Purple


If someone had told me years ago, to wear a purple shirt, I would have laughed at them. Why would I want to look like Barney the Dinosaur, that traumatizing kids show entertainer, who I am tempted to run over with my car if he ever waltzes across the highway? The responding officer would say "Didn't you try to avoid this?" "I did." "Then why did you go four lanes across the road to hit him?" Yeah, the lack of skid marks in the right direction in that case, would probably have me in the pokey or worse for a long time.

Unlike Barney, and that horrifying voice that I hope is used for the military's psychological operations division, purple is the color of epilepsy awareness. Each November is the official month, as people with seizures, or who love someone with them, is wearing this color or a ribbon for this purpose. Funding is so vital to this cause, and that same one that is so very close, to so many people's hearts. There has been so much pain, whether at an emotional level, or with regards to productivity. Along with so many others, I have lost a son to seizures, and to bury your own little boy, changes your perspective forever. You are damn right I will wear purple, not only in remembrance of him, but thinking about the folks whom are contending with seizures right now. 3% of us have seizures on a regular basis. If you are in the United States, that is 9 million plus of our fellow citizens. Now with seven billion folks on the planet, just announced this past week, the number of people whom are dealing with them, our brothers and sisters, we must find a cure.

That's what the purple is about. According to the National Epilepsy Foundation, less the 1/2 of 1% of U.S. government medical research, goes to seizure research. I was startled by that number, considering the amount of folks, that deal with this, and also how lab work on this subject could help with other medical issues, such as Alzheimer's and Parkinson's. It sounds like all of us in the Epilepsy Family, aren't get our fair share of the pie. I find that low number to be disheartening, and while thankful advancements have been made, we still have a ways to go for a cure. If the folks at NIH(National Institutes of Health) and other groups got more government funding in this area, the possibilites are unlimited, and not only those who deal with seizures, but these other medical conditions could also march forward as well.

Right now there is a mom, who's been up all night with her little boy, who's been having seizures all night long. There is also a father, with his little girl, cradling her while she seizes up non-stop, stressed out beyond belief. They are our family members, friends, neighbors. Why not give them the help they need, by making a donation to folks like the National Epilepsy Foundation, going to their walk each March, or at least wearing a purple shirt, a ribbon, or making your facebook profile purple? Its up to all of us, to show purple as a way of saying, "I count, and so does a person I love that deals with seizures." This November be sure to wear it, because while it is too late for my son and so many others who have buried their cherished child, this is our time and our chance to finally show our compassion by wearing purple. Let's get the U.S. Government, and others to wake up to our plight, because we cannot afford to lie dormant, and expect action to move without us greasing the wheel.

Monday, November 7, 2011

The Angel Quilt Project-Help Parents on The Rollercoaster of Agony(Angelman Syndrome)


Its so painful to lose a child. Most of us will never have to go through this ordeal, but a few of us will. This could include a young lady just being born right now, a high school boy playing a game of basketball, or a mother and father who are taking their child with Angelman Syndrome to the bus stop for school. Growing up, I had no idea that my son Tommy would be diagnosed with that condition, and his passing came as a complete shock, as it was from a seizure that not only stopped his heart, but the hearts of all whom loved him. The pain is immense, and from a personal perspective, I not only felt pain about losing my boy, but also for my wife, parents, mother-in law, uncles, aunts, friends, people who worked with Tommy that not only included teachers, therapists, bus drivers, and so many more. He had a bigger family than we ever thought of, and his funeral service was amazing. Here was a young boy who never said a word, inspiring so many, and by the grace of God he walked tall the last week of his life here on Earth.

Right now parents are in grief. They miss their children. Angelman parents are an amazing group of people, and to get a diagnosis of this condition(partial deletion of chromosome 15) hurts a lot. A lot of dreams are thrown out the window, yet new ones emerge. For more information about Angelman Syndrome, I cannot recommend enough visiting http://www.angelman.org/ (The Angelman Syndrome Foundation), or http://www.cureangelman.org/ (Foundation for Angelman Syndrome Therapeutics). Yet it is a double dip of pain, even more worse is the loss of an angel, as these kids are known, to an accident or a seizure. True people die every day, but when it involves a cherished child, its a thousand times over. Its as if you have died yourself, and the road of grief never ends ever. Yet it can be eased. There can be less bumps, even as the tears come flying at a rate unprecedented, and your body pushed to the limits, as you ride a cascading roller coaster of agony.

http://www.facebook.com/pages/The-Angel-Quilt-Project/267961783227848. Please go to this facebook endeavor, called "The Angel Quilt Project." Its love through quilting, and families around the world, who have lost a child with Angelman Syndrome, will receive a quilt with their beloved child, surrounded by angels whom are on Earth, who haven't gained their wings yet. One day, God willing all of us shall, but until then, the least we can do is show these parents that they aren't alone, that there are others who love them, and this is faith in action. Angelman parents are making these quilts, and then delivering them to these parents. If there was a musical equivalent, go see Darius Rucker's, pictured above, "Music from the Heart" video. Its on youtube and all sites on the net, just google it, and watch him perform with children and young adult from Vanderbilt's Kennedy Center. Proceeds from these quilts, also help this Center's Angelman Seizure Research Project. You are not only helping a family in grief, you could very much so be preventing another, from experiencing such pain, such anguish, and a lonely road that no one should have to go down on. You'll be doing your good turn, by even liking the Angel Quilt Project.

How do you do that? Go to http://www.facebook.com/pages/The-Angel-Quilt-Project/267961783227848, and click "like" on that page. Look at it, and see what loving quilts have already been designed and delivered. See and feel the compassion there, as it is kindness in every regard. If you make a $10 donation, you are helping with one of the patches on the quilts, or if you are able to, just spreading the word about this cause is more than helpful. All of us are going to die, that is unquestionable. Yet what do you want to do with your life, is the key question that needs to be answered. A lot of these people who are receiving quilts right now are in profound pain. A young lady being born right now, a high school boy trying for that three point shot, a mom or dad with their kid looking at their yellow bus that's taking their angel to learn new skills. These people need your help. You may not know them, but they are out there. This effort is able to help people suffering now, and might just be one of the keys to preventing others from similar misery. Do your part with the http://www.facebook.com/pages/The-Angel-Quilt-Project/267961783227848, and experience love and bring it to those whom need a lot of it right now.

Friday, November 4, 2011

A Loving Family, the Joseph Gomoll Foundation, and Dierks Bentley: Help Defeat Seizures


There is no denying the sheer amount of people that contend with epilepsy. Some have a few a day, or a maybe once a month. Yet there are others whom have hundreds of them a day, and each person who deals with this condition, has a whole host of challenges, in addition to all of the other ones that we must navigate through on a daily basis. Epilepsy makes the sailing more difficult, but those who deal with it, are amazing individuals who are brave, and not willing to give up on a cure. Others have faced this condition in painful ways as well, as it is not only the person who has these seizures that suffers, but also those who love them. It is even more so, when it involves a child. To lose a child is the worst pain a parent can ever go through, and that is what brings us today, to the compassion and kindness of the Gomoll Family, parents Mike, Nory, and children Julia and Sam. They are here on Earth, while their son and brother Joey, has his wings in Heaven, missed by them, and who's lives were touched by this handsome young man.

http://www.joeyssong.org/dierks-bentley/. Go here and learn Joey's story, and help this family, lend a hand to those who still deal with seizures on a daily basis. They are enrolled in a contest that Dierks Bentley, a kind man and great country singer, is involved with about what "home" means to you. From watching this video, I have to say that their view of home is a beautiful one, but its up for you to decide what it means. Their pain is immense, but yet they refuse to give up, and while they are grieving, they have put this sadness to good use. They are giving back, helping others, and with heavy hearts as a family moving forward, to make sure that Joey's legacy continues on. That would be through a CD, that will raise money for this foundation, that helps epilepsy relate groups find a cure, which is what is needed. Joey's brother and sister are right, "love endures," and with each vote, that can further be the case at the site listed.

Please, go and watch this video. Be involved by voting for this, and by making this family's pain, at least eased a bit, knowing that we are behind them in every regard. Father Mike is so right, "the new normal," because while he and all of us for that matter cannot rewind time, it is what we do with pain, and how it is turned into love, that can be beautiful and help others. We each have only a certain amount of sand in our time on earth, it could be five years like Joey, or one hundred like George Burns. Yet, its not the matter of time that matters, rather it is what we accomplish in it, and how we continue the legacy of our children whom have fallen, or loved ones who have made an impact that does. Mom Nory, Dad Mike, Julia, and Sam, I am proud of you, as are so many more. You are proof of Gods love, and of the strength of the human spirit, that resilience that says "forward march," instead of retreating backwards. Years ago, General Patton's "I don't judge a person by how low they go, but how high they bounce back" could very much, describe the bravery that your family has shown.

Thank you for that. You have already inspired so many, and Joe's legacy lives on. You are helping countless people, not those across the United States, but around the globe. For those whom would like to vote, all of the information is at http://www.joeyssong.org/dierks-bentley/. Let's make this happen, because while we cannot rewind this family's pain, we can assist them in getting through, not over this, along with helping those whom contend with epilepsy. This is a very touching video, and I am not ashamed to admit to it leading to tears, but also generating a further level of resolve, to continue to fight for a  cure. This family is going down a painful path, but they are taking the right direction with their feet, but more importantly their hearts. God bless you all, and to all who would like to be a part of their love, go to http://www.joeyssong.org/dierks-bentley/, and spread, spread, spread!