Signs of Purpose: Help Vanderbilt University's Kennedy Center Seizure Project

By all means, feel free to check out http://shop.signsofpurpose.com/. This is where you can order "Suck Feizures" stickers, that both look cool, are of high quality, and are made of love from proprietor Bridget. I have ordered two small ones, and a huge one, and am quite satisfied with them. What makes me even more happy, is Bridget's kindness in donating proceeds from these orders to Vanderbilt University's Kennedy Center's Angelman Seizure Project. At this moment there are kids with Angelman Syndrome and other conditions going through excruciating seizures, that affect their cognitive abilities, and are causing their parents a lot of stress. As a father who lost a child to this menace, I am proud of Bridget for creating a high quality product, that goes to help out the researchers at Vanderbilt, who are working around the clock to find medicinal combinations that guarantee that another parent will not watch their child go to God far too early, and eventually lead to a cure.

Suck Feizures is a bit harsh, there's no doubt, but its a phrase born out of anger towards seizures, yet with love and a determination to see them destroyed. For those whom do not like this phrase, there are ones that simply say "SF", and they will look cool on the back of your car, or anywhere else for that matter. You can order with confidence with http://shop.signsofpurpose.com/. It is safe, and you are in addition to getting excellent products, making sure that parents around the world know you are united with them. You are also showing children and adults with epilepsy, that you understand their pain, and want to see them seizure free. That means a lot to so many, and the day that I see a "SF" sticker going down the road, I'm going to smile and have a tear out of my eyes at the same time.

Wouldn't you like to be a part of something that special? By ordering from Signs of Purpose you are helping those most at need, children across the globe that are waiting for a day, when seizures won't be a part of their hourly experiences. Yes, there are children who have hundreds of seizures a day. Their suffering cannot be properly expressed in words, but put yourself in their shoes for a moment. Or if your child was going through these, how would you feel? I can tell you firsthand it is heartbreaking and so frustrating, not being able to help your little one, who's seizing up for hours on end. Its even more painful to find your child unresponsive in their bed, and having to do CPR to no avail, while waiting for the paramedics to arrive at your house.

That is why I implore you with every ounce of my passion, to just check out http://shop.signsofpurpose.com/. I hope you will like Bridget's products, and will order them, as I and so many others have. Stunning research is occuring right now, but until a cure is in place, parents are going to continue to worry, "is this the day?" Children with seizures are going to lose their gains they've worked so hard on, such as learning to walk, or skills that have sometimes taken years. Seizures are pure evil, and in order to defeat them, we must use love to help the folks at Vanderbilt's Kennedy Center find the solution. Their team is top notch, and while seriously underfunded, they have already made progress. Now it is time to deliver them the means to cross the finish line, and allow parents and children alike to rejoice in knowing that seizures have been crushed forever, rather than the dreams of so many.

Thank you WINC 92.5 FM and Robert Allen: Shenandoah Valley of VA to D.C.

As a guy who's stuck in a car for long hours of time, I've always been happy to crank up Winc 92.5 FM. While the station's based in Winchester, a long haul from the confides of the Washington D.C. area, their frequencies strength has no problems whatsover in allowing me to tap my toes to their music. The past few months I have been in contact with Robert Allen, their News Affairs Director, and he's a kind man, whom one day I hope to thank in person. From his pictures, you can tell he's a lot of fun, and we shared quite a few laughs on the phone. This was due to the distance to the studio from where I live, and he showed an immediate interest in doing a show on Angelman Syndrome. He interviewed me over the phone about this subject, saved me a tank of gas, and is directly responsible for making this endeavor possible.

I am grateful for his efforts, as he is going to play this interview this weekend and next on Winc 92.5 FM, as well as two other stations in the Shenandoah Valley of Virginia. There are hundreds of Angelman families in the Virginia/D.C. area, and perhaps there are a few folks whom might get a diagnosis, or more information from this. While I may have not did a perfect job, I did do my best to get as many plugs in as possible for the Angelman Syndrome Foundation, what this condition entails, and how it affects families. It was a much more calming environment from the confines of my backyard rather than a studio this time, and Robert's professionalism and decency, made it go so smoothly. It means a lot to have folks like him willing to keep their word, and to allow a simple man an opportunity to generate awareness about Angelman Syndrome, and the foundation that has been a rock of support in good times and bad.

Thank you Winc FM 92.5 for being a friend to the Angelman Community. The same goes to Robert, who has helped out immensely, and is making sure that it gets a lot of air time. While we do not have the cure yet for Angelman Syndrome, or the seizures, progress is being made on a variety of fronts. With each person who hears about what it is, brings an increase in the chances of this dream becoming a reality. May that happen for those with Angelman Syndrome and their families, along with those who are trying to find a cure for conditions such as CDKL5, Rett Syndrome, Mowat Wilson Syndrome, and other genetic disorders that are becoming much more part of our lexicon than they were in the past. God bless the folks such as Robert at Winc, who have helped in more ways than can be expressed here, because we must do all we can to achieve success in cures and therapies that will help all with conditions that affect their quality of life.

Faith is a Work in Progress: Pain and Glory

Today was a typical day at work, in that the clock there seems to take longer to move, than the one I have at home. As a person who works in a uniformed capacity, there are some funny moments, but quite often there are incidents that have a direct affect on my faith. This Friday was one of those, as I had to respond to help staff at an establishment, deal with an emotionally disturbed child. Due to privacy I cannot of course disclose where, but I was heartbroken to see this seven year old boy with Autism, screaming and throwing around furniture. My bald head was almost pelted by a chair in the process, and this young man continued to scream and act out of control for nearly an hour. This wasn't my first call for such an event, and it probably won't be my last. Yet this one really hit me at a level that none has before, as this young child had more anger than I've ever seen, and strength that defies conventional logic.

After turning this child over to his mother, I left deeply shaken. My mind instantly went to "how can God allow for this young man to suffer so much, or the burden that his parents must face on a regular basis." I sat in the solitude of my car, and although I did not weep, it was a close call. It was more of a shock than anything else, and in addition to a pounding headache from his screaming, I started to question my faith. While that is not frequent, it does happen from time to time. Faith is a work in progress, and after spending a few minutes quietly reflecting on this incident, I went to a Subway restaurant for lunch. In front of me was a sweaty man, who had a t-shirt on for a lawn care service. He asked me if I wanted to go ahead of him, and I demurred thanking him for his kindness, and he told me "God is great." On a 100 degree day, this good man was at the right place at the right time. As I waited for my order, I saw him praying to God before eating. I couldn't help but thank him before leaving, and he looked at me and said, "Due to the love of God, if I don't see you around here another time, I'll see you in Heaven one day."

Later on in the day, I met a lady who told me about her son. She told me about how proud she was of him, and I'm not easily impressed, but her "service above self" approach brought me back into the fold. Her son graduated from college recently, just completed his first year of teaching, and has chosen to work with the "most difficult of children." He has taken a lot of them under "his wing," and still goes down to his college town on a regular basis, to continue his mentoring program. There he engages teenagers by teaching them how to break dance, and usually the next day, their parents show up. The parents join their children in learning how to do various dance moves, and she told me of how she believes in helping others. An example of this, is how her daughter whom she should also be proud of, stood up for another girl who was about to get beaten down for no good reason. Her daughter also showed the iniative, of getting her parents to teach another young person how to drive, so she could become more productive by getting a job while going to school.

God works in mysterious ways, and today was a good day after all. There are bumps in the road, where our faith is tested. Some days, to quote a commercial, "are better than others." Yet each day begins anew, with possibilities and chances to have your faith strengthened. Sure, it can be a bit like a rubber band at times, but you always come home to the Holy Spirit that surrounds us at our most difficult of moments. I pray for that young man, and his family. I also pray for this kind woman, who has shown her children the proper path in life, and that man who works for a lawn care service. They are examples of faith in action, and I very much am appreciative for them today. Our actions have a direct effect on each other, and through God's love, we can become not perfect, but at least content and know that we can accomplish much more with faith than without it.

Dr Jonas Salk and Polio-The Impossible Cured

Polio is still present in the world, as a horrible viral infection, that can lead to paralysis, and in some cases death. In most countries, it has been completely eradicated, due to the work of Dr. Jonas Salk. It has been around for centuries, yet appears to have been a major concern from the 1800's, and wreaked havoc in the 1950's. My own grandmother had polio, and while she recovered from it, had several health effects for years after contracting this disease. It was thought to be "impossible" to find a cure for this, and many tried and failed to come up with a cure for it. However, researcher Dr. Salk made the "impossible possible." He was able to create a vaccine, that prevented it from attacking your body, and we should all be thankful for his dedication.

All of the critics, the naysayers, were proven wrong that it would never be stopped. It was, and much like other diseases, it has been eliminated as a cause of suffering and premature death. So what does this have to do with seizures? A lot actually. While they are two different ailments, Dr. Salk found a cure for what was supposedly "not going to happen." Right now researchers at places like the Vanderbilt Kennedy Center and others are working around the clock, as while we should be thankful for medications and surgical procedures, it is simply unacceptable for a young person with seizures to be put into induced comas to stop seizures. It is unacceptable for a young boy or girl, as each human life is precious but especially a child's, to be ended so soon by these abnormal signals to the brain.

Recently, there has been a lot of good news on this front. While a cure hasn't happened yet, it is in the realm of possibilities. The last twenty years of medical research, have led to breathtaking improvements, that also are possible due to advancements in technology. Awareness has played a huge part as well, because people are realizing the seriousness of what seizures can do to a child or an adult. That is why I have hope, because of people like Dr. Salk and researchers today, and what they are doing to make what was impossible much more likely. We must remember the fallen, those who have gone to God far too early from seizures. They must be in our hearts, and a reminder that we cannot ever give up, until a cure is achieved. Godspeed to those working on this right now, because while your coffee cups are constantly being filled, it is through your dedication that these seizures will be destroyed, and what will be left is peace for so many, and those who love someone who has this condition.

Thank you to Mix 107.3's Tom Grooms and the Spectrum Program: Angelman Syndrome, Seizures, and Much More

Although I have done a television interview about Angelman Syndrome before, my first radio interview was much more nerve racking. The day started out calmly enough, as I was off from work, although I did not get a lot of sleep the night before. A bit of play time at Dave and Buster's, basically the adult version of Chuckie Cheese playing skeeball and other games while having a beer, calmed me down immensely. The drive into D.C. was a whole other adventure all by itself, because coming in through Maryland, required putting the "pedal to the metal," and driving down the narrows lanes of Wisconsin Avenue through the busiest part of the Nation's Capital. After a another couple of hours of taking a walk, that was possible due to the kindness of a security officer in charge of the stations parking garage, I sat down with Tom Grooms and his show the Spectrum. This was aired on WMAL AM 630, 105.9 the Edge(my personal favorite), and Mix 107.3, all of which are owned by the Citadel Broadcasting Corporation.

Tom is truly a kind spirit, and put me at ease before our taping started. He is a professional in every regard, and came up with a way to help me prepare for this interview. A big thanks also goes to Devar Burbage from the Angelman Syndrome Foundation, whom is now my "new muse," and "safety system," in many ways. Sitting in the studio was interesting, as I was in a soundproof room, that was tiny, and in front of perhaps the biggest microphone known to humanity. It was a bit intimidating at first, but thanks to Tom's guidance, the interview went fairly smoothly. With more experience, I hope that there will be improvement, but it is so kind of Tom Grooms for making this happen. Three stations on a Sunday morning played this show, which has a link down below.

I would like to thank a kind New Zealander named Darren Humphries. He is an angel on Earth, as he has also faced the pain of losing a child to seizures, and has continued Elijah's legacy with grace and courage. Darren was able to reach out to me after I lost my son Tommy to a seizure, all the way from across the globe, which is proof that love and compassion have no borders, nor is it hampered by distance. He also made this recording link possible, as he helped guide my lack of technological skills with Skype, and produced this from a CD given to me that was kindly recorded by Tom Groom's son, whom I had the pleasure of meeting while in the studio. Without further adieu, here is the program, and thanks to all whom made this happen. One day a cure for Angelman Syndrome and seizures that affect not only angels but kids and adults that have other conditions, will be discovered.

http://www.4shared.com/audio/EV9nTKTb/Mike_Ross_Radio_Interview.html

Anniversary Dates are Painful Reminders, but also Times for Hope

July 21st 2011 will be just another day, the sun shall rise, and it shall set. People will go to work, vacationers will play on surfboards in the ocean, and traffic regardless of where you are shall be backed up. For our family it is a solemn date, as it would be Tommy's seventh birthday. His body lies six feet deep near a Pine tree, yet I have no doubt that he is with God, as he is now an angel in Heaven as he was on Earth. There will be tears, but there will also be smiles. It will be a bittersweet day, and I'm going to look into his younger brother's eyes, and look at him and see the closest thing to Tommy I can see for now. He is still too young to understand about his older brother, but as he grows up, he's going to learn all about him, and all of the lessons that he taught us.

In honor of Tommy, we are probably going to the pool where he learned to walk for the first time. The other day we were there, and seeing that area brought a whole bunch of emotions. It was not easy as I glanced over there remembering that summer day in 2009, yet after awhile I went over there. There was some comfort thinking about that day, and how Tommy walked strong, with courage and determination that I shall never have. He walked across the living room his last week, and proved that he stood strong, and didn't let any obstacle get in his path. I'm extremely proud of him, think of him everyday, and while tomorrow is a painful reminder, its also a day of hope.

The past two years, there have been developments in seizure research. A mouse has been given Angelman Syndrome, and cured. While there's no cures yet for the seizures that took Tommy's life, there has been breathtaking research with new pharmaceuticals and a project that showed how to cure seizures in various parts of the brain. I have no doubt that there will be a cure. It cannot happen fast enough, but I feel confident in what the folks at Vanderbilt's Kennedy Center and their Angelman Seizure Research Team are doing. There are other efforts going full throttle in the United States and abroad, and while it is too late for Tommy, I will be more than happy to fire up a cigar, drink a bottle of beer, and smile a huge grin the moment this event occurs. It will be a momentous day, when parents who've watched their children with Angelman Syndrome, Rett Syndrome, CDKL5, Mowat Wilson Syndrome, Heller's Syndrome, and other conditions can at least live without that worry.

I am a simple man, and will never be a doctor. That's okay, because even if I was, I'd still be last in the class, but of course called "doctor" regardless. Yet, often I pray and keep feeling the holy spirit saying "go, go, go, go" and "never give up." Tommy never gave up. Nor shall I or the legion of parents whom have to face seizures on a daily basis, with their children who get knocked down by them, but who always get up and have a desire to not let anything get in their way. Tomorrow the sun shall rise and set, yet efforts around the clock shall not. A cure for seizures is going to happen. I know it in my heart of hearts, and while I can't wear the same smile Tommy did, let's keep going for that cure and like our children never giving up until we cross the finish line.

A Brave Family, Two Angels, Seizures, and Love

Seizures have caused a lot of pain for families across the globe. Regardless of your background, religion, or what country you happen to live in, they have caused soul crushing angst to so many. Some people have lost their lives far too early to this medical condition, that needs to have been cured yesterday. There have been advances, and the future does bear fruit, but it is time for these to stop right now. I want you to put yourselves in the shoes of a family for a moment, and to get comfortable in those sneakers for a few, and ask you to personally experience their story. You are now the proud parent of two twin boys, and you have nothing but dreams of your little ones, imagining them to play music, sports, and to one day find a person to marry. As you hold these precious little ones, you look into their eyes, and hope that you can teach them values, to respect their elders, and to carry themselves with character that will make you proud.

Your dreams are smashed into a thousand bits, as you receive news that your sons have Angelman Syndrome. This is caused by a deletion of chromosome 15, and causes profound intellectual disabilities, thus making you realize that those dreams are out the window. Yet the love continues. You love your children with all of your hearts, and soon learn that your "angel boys" are indeed that, with smiles, laughter, and loving personalities that touch the very essence of your soul. While they may not play baseball, they shall learn skills, play in water, and give strangers and friends alike a hug at every chance. Yet seizures start, and at fourteen months of age, you watch the boys you love having these that are so severe that its a constant struggle.

You spend an entire year at a hospital. One of your twin boys has to be placed into a coma to stop the seizures from ending his life. You are told by a doctor that "your son's have a 1% chance of living." Imagine that horror, that news, and how you would feel with this. Couldn't you feel your heart just sinking, your tears down your face, your whole being being crushed at the core. How would you feel if your children are having hundreds of seizures a day, rushing to the hospital chasing an ambulance, and spending years of time in the Intensive Care Unit?  What would you experience seeing your sons have brain damage, one have a stroke, and the other one lose the ability to walk again?

A kind family in New York has experienced this. What you are reading is real. Step back for a minute, as you are sure happy to have your "old shoes back." This family is contending with seizures, that have not only made their angels suffer, but them as well. They have devoted twenty four years to their boys, in ways that they could never have foreseen. An Angelman Syndrome diagnosis is a tough enough pill to swallow, but to contend with seizures such as this, that have left your babies with a stroke, the inability to walk, or dragging a foot is a knockout punch of challenges. Yet this family and its resilience is a testament to love. Mom, Dad, and their other daughter have been through so much, yet the carry on with their heads held high.

Here's where you come in. While this family has to contend with daily struggles, you can help their angels. You can support fantastic organizations, like Vanderbilt University's Kennedy Center's Angelman Seizure research project. Why not give these young men, who still love, have laughter, smiles, and dignity a chance to not go through these seizures anymore? Every bit helps, because while it is too late to rewind the clock for this family, you can help them, and children right now who are going through seizures that have devastating effects. This bright light in New York needs your help right now. So do countless bright lights across the United States, and countries across the world. Wouldn't you like to know that you helped this family out, and so many others out, by supporting Vanderbilt Kennedy Center's project, that shows promise in making seizures a "menace from the past?"

This family should be commended for their love. They have been through so much, on a physical, mental, and emotional scale, that it is simple incredible that they are still standing. Yet they are upright and tall, and all of us are related, so pray for these two young men and their loving family. Get on board with helping Vanderbilt and others, who are trying with big cups of coffee and lots of dedication, to get rid of seizures. The time is now for this to occur, as so many are right now on the brink of mere survival, and "angels" must be shown our love, respect, and our willingness to step up just like this family to get rid of seizures forever. This family has sacrificed, and they have suffered, but yet they persevere. Let's help them, and Joel and Jay, who still have smiles on their faces, with all that they've had to contend with. Now is the time.

I Have a Dream-Seizures Will be Cured

"Let us not wallow in the valley of despair, I say to you today, my friends." Those words were said by Dr. Martin Luther King in the 1960's, in his famous "I have a Dream Speech" at the Lincoln Memorial. Watching this speech, or even reading the text alone, will most certainly send chills down your back. He was a great man, and was correct when he said "not to judge a person by the color of their skin, but rather the content of their character." The United States and other countries around the world have come a long way, although there is still work to be done. The same could be said for seizures, as while researchers are working around the clock for a cure, SUDEP is a serious condition that many have experienced firsthand. It is a horrifying experience that words cannot articulate, and especially with regards to the autism spectrum, seizures are a component in many cases. That is why it is my dream, along with the dream of millions across the world who deal with seizures, to have that much needed cure. It is something that must be done, because even if it a seizure does not prematurely end the life of a young man or woman, it has damaging effects.

It is gut wrenching, to see a child go through seizures, and so many parents around the world feel powerless when these events occur. You wish you could take the place of your child, and take the punishment yourself, or that you could just wave a magic wand and they just disappear. Unfortunately, there's no magic wand....yet. There will be. Children with seizures will no longer lose all of their abilities from these seizures, especially developmental milestones that have sometimes taken years to achieve. Parents who have taught their children to walk, or grasp on to objects for long periods of time, will one day not have to worry about having to constantly repeat these skills one day.

Last night, I took a walk outside and looked at the Moon. It was said to be "impossible to reach." Humans have been there, done that, although it has been awhile. I thought about General Washington's impossible surprise at Trenton. And then I thought about the past twenty years of computers, and how far science has come. There wasn't any drinking at all, as while that's a variety of subjects, consider the Apple II C. When it was released it was "breath taking technology", now your toaster oven has more processing power. The same could be said for your cellphone, as that has more hardware capabilities that launched those astronauts to the Moon. That is why our dream of a cure for seizures, is not only plausible, but in my opinion its going to happen with the dedication of folks like Vanderbilt Kennedy Center's work on this area of medical science.

There is much despair right now. The valley is full of bumps, and a lot of pain. Yet there is hope, and that is the greatest of all qualities. We must not give up, as the dedication and love of so many researchers across the globe, of all backgrounds and religions are working dilligently to find the cure that is going to be breathtaking. President Kennedy's speech that described dreams as being done "not because they are easy, but because they are hard," could also be related for so many people's dream of a cure for seizures. Yet Dr. Martin Luther King said it best with "I have a Dream." We all do, and God willing it shall happen as soon as possible. Thank you to all whom are working on a cure, we are all praying for you, and waiting for the day when seizures no longer are an issue that affect so many, but yesterdays' news.

Linium's Kindess to Helping out the Angelman Syndrome Foundation is Greatly Appreciated

Linium is a business that I do not understand, as I'll admit to being a caveman with regards to technology. Their IT solutions are no doubt impressive, because as I read what they do, I realized quickly how "over my head" they are with their business accumen. Their technolgical knowledge is so helpful for businesses, and along with that, their big hearts have touched so many. Linium is sponsoring an Angelman Syndrome Foundation fundraiser, for one of their employees Joe, along with his son Carson. Their love in "plain english" is obvious, even as their IT codes and terms leave me greatly befuddled. Thank you Linium for being involved in a good cause, and showing what a fine business does, in being part of a community that is grateful for your assistance.

The family's fundraiser is going to be in Honey Brook, Pennsylvania on July 9th of this year. It is going to involve a ride through the beautiful countryside, and help generate awareness of Angelman Syndrome, along with helping folks like Carson get extra opportunities and a better chance at a cure.  This worthwhile event is going to be held at the Honey Brook Lions Club, and if you want an angel hug, there's a good chance that will be in the cards for you. The Poker Run is sure to be entertaining, but if you cannot make it, you can help in other ways. A donation to ASF HB Angels at 409 Cupola Road Honey Brook, PA 19344 would be a fine way of helping this noble cause. Let's get Carson and all angels the cure that they so richly deserve, and get other folks to know about Angelman Syndrome, and have the same passion and zeal that so many already have.

Thanks to Carson's family, along with Linium, this event can proceed with gusto. May the weather be beautiful, with plenty of sunshine, and comfortable weather. If you want to learn more of what Linium does, feel free to check out their webpage at http://www.linium.com/. I am very thankful that they have decided to help the Angelman Community, which is much larger than the one in fifteen thousand births number. When you add up all of the angels, those whom love them, along with who the angels have inspired, that is quite a crowd. God bless the kindness and decency of Linium and its employees, and go Carson go!!