The Epilepsy Foundation's Walk 4/20/2013

Do you want to be a part of something special, and meet family that you never knew you had? I strongly recommend going to the Epilepsy Foundation's walk in D.C. Last year I met lovely folks, and as over two million Americans and sixty five million folks worldwide contend with epilepsy, this is a cause that you do not want to miss out on. I had to chuckle, when I heard the date was being held on 4/20. Puff, Puff, Pass. Yet in all seriousness, this is a fun, family friendly event, where you walk around the sights of Washington. There are teams, and I would like to say a special thanks to Jaime, Sara, John, along with Rob, Lisa, and Evan. You know who you are, and you inspire me by your courage everyday. May this year we walk again, and I have learned so much from you.

The weather was fairly cooperative last year, and I hope it will be the same, because thousands of people show up. You will see more purple here, than anywhere this side of Barney the Dinosaur, and it truly is a sight to behold. Every event held by the Epilepsy Foundation, I have learned something new. For instance, last year it was the effects of sports injuries, along with what's going on with our heroes, who are returning home from battlefields with seizures. It was such a joy, to walk with people who are contending with epilepsy, or love someone with it, and don't believe in giving into "the E," but rather believe in stepping up to it. True champions the walkers are, and people from all across the US show up here.

If you want to attend, let a bald man know. I live just outside of DC, right next to the metro. We'll put you up, and "leave the light on for you," just like those Red Roof commercials. This is a great way of showing your support, along with raising funds for epilepsy awareness and research. Professionals from the field are in attendance, as are representatives from the National Epilepsy Foundation, which is located in nearby Landover, Maryland. If you are interested, here's the link, and by all means come on down to D.C. and rock the purple.

http://giving.epilepsyfoundation.org/site/PageServer?pagename=2012_Walk_Homepage

Angelman Syndrome: In the Coming Years

I don't know if there is ever going to be, a cure for Angelman Syndrome. It is my sincerest of hopes that a breakthrough occurs, and if not a cure, at the very least for medicines and treatments that can help those with this condition. Dr Harry Angelman is not alive anymore, but his legacy from his discovery and further works live on, as does the science being done at laboratories, universities, and hospitals across the world. Yes it is too late for my son, but I will be shedding tears of joy, if a cure can be found. I will also respect the decision of each family, to go through with a cure, or keep their angel just they way they are. Research is promising, and with regards to treatments via mice and with other technologies, along with cancer fighting drugs, there is hope. Yet it is with all of my heart, that parents of those with Angelman Syndrome, don't lose focus on the current battle.

That is awareness. Right now a parent is just finding out there child, has this condition, which is caused by a partial deletion of chromosome 15. As a society, we must be there for all families learning this diagnosis, which is devastating on many levels. You realize that your kid in most probability, unless something dramatic happens in the research field overnight which is rarely the case, will be severely cognitively impaired. Yet that's not a reason to give up, as a child with Angelman Syndrome, has more love in their hearts than all of us combined. There are still doctors who have not heard of it, but that has changed over the years, and advances through social media and other parameters have changed the equation. May this continue, and along with helping families who have an angel, let's pray that the research bears fruit.

In my close to forty years on this earth, I have seen amazing leaps in technology and medicine. The other day I was on the net, looking at 80's computers, and we've come a long way. To think that our first phone looked like a suitcase, and the current smart phone I have, has more computing power than any of the Apollo Missions is fascinating. You don't need a super computer like a Cray, to figure out mathematical equations, or crunch scientific data anymore. The DNA sequence discoveries, along with emerging technologies and tests, shows that the potential for cures for a myriad of conditions is indeed possible. I hope that is the case with Angelman Syndrome, and the day that occurs, I hope to be here and crack open a bottle of champagne.

What I like the most about a lot of the new treatments, is that they are not controversial. There are no embryonic stem cells being used, and a lot of the drugs employed are already FDA approved. Just like other medications, the cancer fighting pharmaceuticals show a lot of promise, in that they have other intended uses. The UE83A Gene is fascinating, in that it could be a definitive marker for autism, along with being related to the seizures that not only "angels" experience, but hold relevance for the entire epilepsy community. 2013 is going to be an exciting year, I have no doubt about that, and like others I am praying that there is an "aha moment," where the breath taking discovery will be made. Its up to all of us, to continue to march forward on that path, while supporting one another to that very destination.

Anti-Depressants and Grief: Today's Washington Post

The Washington Post today had an interesting article, with regards to anti-depressants and grief.(http://www.washingtonpost.com/business/economy/antidepressants-to-treat-grief-psychiatry-panelists-with-ties-to-drug-industry-say-yes/2012/12/26/ca09cde6-3d60-11e2-ae43-cf491b837f7b_story.html) While the gist of it was about certain ties, between pharmaceutical companies, paid advisers, doctors, etc, it brings about a compelling question. That is of course the anti-depressants for dealing with the death of a loved one. While the study focused on spouses, many of us not only in the US, but around the world have buried our children. It is a parents worst nightmare, and said to be the most harsh punishment to the soul, that anyone can go through. I don't know who wrote that, so no plagiarism is intended, and if I can find that source I will be more than happy to credit them for it.

Psychiatry is a medical field that has a mixed record. To be upfront, do I believe a lot of the disorders listed in the Diagnostic and Statistical Manual of Mental Disorders are real? You bet. The DSM is a source for all doctors, not just psychiatrists. It has relevant information for the lay person as well, and can be found at libraries, police stations, and fire houses. As for psychiatrists, I often make fun of Dr. Leo Marvin from "What About Bob," but there are some that are truly compassionate. It is a shame that there is a stigma about mental health and medications, and that is troubling. Anti-depressants have a variety of uses, and can even be used as seizure medicines. Yes there are side effects, but of course, the same could be said with any prescription drug.

This article went into grief a bit, and termed a loss of a spouse as "distress" rather than depression. Both stink, so for getting into semantics, there's really no point. My wife and I could have used anti-depressants after our son's death, but for us, we wanted to feel the pain. Sound nuts? Perhaps it is, but we felt that we had to have the compounding pain, to help us get through not over our loss. To each their own, and I know of others who have had great success with anti-depressants after such a trauma. No matter what road you pick, its what is best for you and your family. Looking back, perhaps they could have helped us, or at least lessened some of the raw emotions felt to go through the grieving process. Yet as we never wished physical harm to ourselves or others, which I consider the threshold to go the medicine/psychiatrist route and then some, I don't think they would have made much of a difference.

I am concerned about the link between paid advisers, and now anti-depressants being recommended more for those grieving. While I'm not an expert on medicine, the fact that there does seem to be a conflict of interest, is one that is a concern. The first priority should be, what is right for those in grief? Especially with regards to a tragic loss of a child, or an unexpected loss of a spouse. I just don't know the answer, but I do think more needs to be researched, in lieu of this article's findings. It might just be scratching the surface, because not only does this affect people who are depressed/grieving, there are a host of other conditions these particular medicines treat. Safety is paramount, as are ethics, and if they are breached that brings in a plethora of concerns to the table.

Its Always Someone Else

You see a tragic event on the news, and feel sorry for the victims. Whether its a car bombing, bus accident, or in this past month the savage, evil attack on small children and their teachers, we seem to have short memories. Yes we anguish for these little angels at Sandy Hook, and while there's always political repercussions after such events, we always think, "Its always someone else." That's not callous or to say that a person does not care, but it is probably a survival mechanism, ingrained into us as a means of contending with this harsh world we live in. All of us cried tears for those children at Sandy Hook, and so many other times when evil has walked into a place of innocence. May our prayers, and our hearts be with those children who saw in their last moments something beyond comprehension. Those parents are suffering from an unimaginable grief, because while many of us have lost children to natural causes, they kissed their son or daughter that day never to see them again. To the first responders and the brave Principal and staff, their families are also waking up to a new reality, one that they could have never imagined.

Each day we get out of our beds, there is a chance, that it could be our last day on Earth. There are so many mysteries of life, such as why so many good people die young, and that song from Billy Joel is a reminder of our mortality. Its up to each and everyone of us, how we want to carry our lives. Either we can live in fear, by pulling the covers over our eyes, or embracing life to the fullest, each and everyday. You just never know when it will be your last, and while we all have regrets, may they be minimized by living each day with purpose. This does not require anything special, as the only obligation is to savor what matters, whether that being spending time with loved ones, learning something new, or stepping up to volunteer in your community or for a cause. We are put on this Earth with finite years of life, and our sand glasses are only so full. Most of the time, we don't know when that sand will run out, and for that reason alone, "carpe diem" is the mantra that should be the order of our existence.

This past year, many children have lost their lives, whether it be to seizures, accidents, unforeseen conditions, or in the face of evil. We must cherish their memories. May communities rally around those who are in the midst of pain, that are beyond what any of us can fathom. My prayer is that these families will find solace with one another, rather than being divided by such a disgusting act of hate, and respond to each other with love. They have a long road ahead of them. There will be fallout. That is to be expected, after such a trauma, not seen coming in, with a loaded assault rifle to do nothing short of commit a heinous crime of unspeakable volumes. Yet we should all have hope. We should hug our children even more tightly, and let those in our lives, who mean everything know how much we truly do love them. May the healing begin for the folks of Newton, and around the world where the ripples of this pain have been sent, and with that wave, not allow us to forget that our days could come crashing down upon us at any given moment.

The 2013 Angelman Syndrome Calendar is Awesome

I just got the 2013 Angelman Syndrome Foundation calendar in the mail, and I'd like to give a "shout out" to John who makes these. It was done with love, and I smiled upon opening it, seeing so many angels. The calendar is going to be put in our kitchen, so that each day we can look at these beautiful folks, whom we all very much love. I had never ordered a calendar from the ASF before, but wish I had, as it is a reflection of not only who angels are, but the cure that is so desperately needed. There were some tears as I read the memorials page, and yet at the same time, I am proud of their parents for writing so beautifully about their children missed. They exemplified perfectly, how loving angels are, and truly reminded everyone to appreciate each and every moment.

This calendar is of exceptional quality, and I like how its presented, with pictures of angels. Its colorful, and also educational. There is information on there that is helpful, along with what developments are being worked upon, and future events. Yet my favorite feature, is the birthdays of angels being listed upon the days. I smiled looking at the pictures of angels, many of whom I have met, along with those who I've seen online. Their grins just "turned my frown upside down :)", and provided some comfort. As did the picture of Tommy, our boy who is missed, and his picture of him in his ball pit brought joy that I didn't think it would.

If you go to www.angelman.org, you can order one of these calendars. I fully recommend getting one of these, as its a great gift idea for the holiday season. My wife and I enjoy it, and look through it often. Our three year old found Tommy too, which was an experience that we will always be grateful for. Providing that the Mayans are incorrect, as the yogurt in my fridge says good until 2013, this calendar will be a fine reference for putting down information such as meetings and events, and I look forward to going to the kitchen now even more. Thanks again John, as you made our family smile, and its always an honor to see angels, and support an organization that is working tirelessly for a cure while generating awareness at doctors offices and in communities around the world.

John 15:13: The Beautiful Words of Jesus

"There is no greater love than to lay down one's life for one's friends." John 15:13. I have always been touched by this passage in the Bible, a book that I still don't fully understand, and there's good reason for using the New Living Standard version. The King James and other editions, are impossible to comprehend. Yet here, clear as day, Jesus says perhaps one of the most beautiful, loving, and inspiring quotes. Whether its in a literal or figurative sense, this is what we all should carry ourselves like, on the journey from birth until its our time to go home. That brave Tbilisi police officer, who years ago, put his life on that grenade to save riders on that train is proof of that very love. Yes he was "doing his job," but yet in that instant that he had to make a decision, he gave his life so that others may live. Fathers, mothers, children all going to school, work, or to a trip to visit friends.

No one ever wants to have to make that ultimate leap of faith, but we all can in a figurative sense. That being supporting our friends, who are dealing with grief, or are in need during the Christmas season. It shouldn't always be "this time of year," but this is the period of the calendar that seems to get the most attention. Right now there are countless people contending with Angelman Syndrome, Rett Syndrome, and other medical conditions that need a cure. The autism spectrum is huge, and by the grace of God, it is partially in our hands to knock seizures to the curb for good. We have the ability to advocate our position, and that line in the sand, that says "we can do something, instead of waiting for someone to do something for us." Complacency is the mother of all battles, and its something we must stave off from. Its fine to take breaks, but the fight must continue on, as that is one of both love and perseverance.

A lot of parents this year are suffering, as they have that Christmas tree in front of them, without their little girl or boy, granddaughter or grandson, niece or nephew, brother or sister. All of us should be praying for them, as this time of year is especially painful. Yet on what John 15:13 brings up, we must love one another. All of us at one point aren't going to see "eye to eye," and there are times that we are at polar opposites on something. That's okay, as we are all unique, human beings. Sometimes battles in life cause one to become ornery, or through pain, can affect the kind nature of our friends that have become distant. Make that connection with them, and forgive. Grudges aren't good for anything, and that's something that took me years to understand, but it really is best for your health to just "let them go." They are extra weight that's not needed.

As we wind the year down, there are many issues on the table. Don't worry about the 12/21 Mayan Calendar, as the food in the fridge says "good until 2013." Instead, let's focus on what we can accomplish this year, and in the next one, that is bound to have medical discoveries that are new. Most importantly, let's shelve the battles of the past, and focus on our connections with one another, as we battle Angelman Syndrome and seizures together. That's right together. Yes, the epilepsy community is a eclectic bunch, but we really are a family. Love one another, as our hearts are needed to be on the same beat, and that is with each other. God bless you, and may we all live these words of Jesus, and may they be in a figurative sense as we work on finding cures and helping out each other navigate the tough woods of life.

The Angelman Walk: With Tommy and Without

I will never forget my first Angelman Walk, that supports the Angelman Syndrome Foundation. The year was 2005, and it was about eight months after finding out that our boy Tommy had this condition, that is caused by a partial deletion of chromosome 15. I'll be completely upfront, because that first walk was very painful for our entire family. I cried so many tears, seeing "angels," and realizing that this was Tommy's future. He would probably never talk, and seeing so many angels of so many differing abilities, just broke my heart, especially for the older ones that did not have the same early intervention that Tommy was blessed by. I remember my aunt hugging me as I cried, and while I did finish that walk, there were just so many tears.

Yet I learned a lot during that walk. While not a "trail of tears," such as the Nez Perce had to endure, it was with heavy shoes. Each couple hundred of feet, was a sign that showed what Angelman Syndrome was, and I learned from these a little bit more. Yet what I felt meeting other parents, and angels, cannot be described in words. Rather I felt a kinship, a family that I had not meant, but was glad to have in my corner. The first walk I attended was in Chantilly, VA, and this of course for the Washington D.C. Baltimore area, has now been moved to Columbia, MD. It takes hundreds of volunteers, and thousands of hours to set up these events, and I am grateful for those who've spent the time doing this.

Back then in 2005, if I remember correctly, there were only about nine walks throughout the USA. Now there are over twenty, where families can get together, and to meet up in person, along with sharing strategies to help their little girl or boy do the best that they can. I am forever indebted to so many who reached out to us, when we found our son's diagnosis, and the Angelman Syndrome Foundation provided us with a wealth of information. True we had some luck on our side, as our pediatrician already had an angel in his practice, but many medical professionals rely on information from the Angelman Syndrome Foundation. That is why there aren't so many "What is Angelman Syndrome questions" anymore, although much work still has to be done in this regard.

I have enjoyed each walk. Last year I skipped out on, as I was severely depressed, about Tommy's passing. Yet I look forward to going to this years, as I have with and without my boy. In 2011, it was a joy to be the kids entertainment dude. Yeah, I never thought that would be my forte, but it was fun just having angels and their siblings dancing around, along with singing karaoke. Getting those angel hugs meant so much, because while there were tears, many of them were with a joy that's impossible to even describe. Yes, the tears went down my face, but there was a smile with them. Each year there have been more families attending, and I'm excited about the one to be held in May of 2013.

This is the time of year, when our holiday spirit must be in full force. If you can donate to the Angelman Syndrome Foundation, you are helping so many families, along with research that is happening at breakneck type of speed. There have already been some discoveries, and with each one, its a building block for what all families want, and that is a cure. As the end of 2012 rolls, this is a great time for giving, because not only will you be helping out people with Angelman with a donation to this foundation, that is the largest non-governmental research contributor to finding a cure, but you will also  be able to make a tax deduction on your upcoming headache from the IRS. It is a win-win, and there are also calendars available, that show children and adults with Angelman Syndrome, that will lighten up the mood of even the biggest Grinch in the world.

Going to the walk without Tommy, always leaves an empty spot in my heart. Yet I must carry on in his honor, along with all of those angels who've gained their wings in Heaven. Today his younger brother was asking all about him, and darn right he will be at the National Walk this May. He will get to see angels, and may he get those hugs, along with seeing those smiles and laughs. I believe very strongly in the Angelman Syndrome Foundation, along with families who have gone to great lengths, to make it is what it is today. This is on charity navigator, completely transparent, and full of love. Thank you to all of the folks at the ASF, along with the countless volunteers, parents, and families who've supported it over the years. On to a cure.

UBE3A Gene: Why This Is Important in Seizure Research

According to Dr. Olson, the UBE3A Gene is responsible for seizures in people with Angelman Syndrome. This has been known for years, and recently groups like the Angelman Syndrome Foundation, have been putting money into research to look at this angle. They are of course located at www.angelman.org, and are the biggest non governmental entity, with regards to researching this medical diagnosis. So what's the big deal about the UBE3A gene? Well, considering that its been isolated, this could not only lead to seizure treatments for "angels," but for people with generalized epilepsy as well. This gene has been shown in people also across the autism spectrum, which why at all haste more research needs to be done, and the sooner the better.

I have been trying to learn as much as possible about this particular gene, and how it has been researched at places such as UNC Chapel Hill. It is with profound interest, if finding a way to develop this in mice and other creatures, could lead to breakthroughs for human beings. While a lot of the scientific journals are above my head, some of what I have read and digested, has been encouraging in many regards. The coming year I hope there are more discoveries, along with a way for this UBE3A gene to develop, some anti-seizure methods that can not only stop people from having seizures, but ultimately save lives. 50,000 plus people per year die from seizures, and its time that number is dropped closer to zero.

The researchers who have doctorates from prestigious schools, have accomplished so much, and with the advances of technology there's no doubt discoveries are going to be made. Yet even with this information, we cannot be complacent. Rather, we must continue to let our legislators know of the importance of medical work, as it is a moral battle that can ultimately save lives. If this gene is prevalent to angels and those across the autism spectrum, where seizures are common place, then it may lead to work that can help everyone. That's what matters, and from my heart, I hope that people will be generous towards groups like the Angelman Syndrome Foundation, and other organizations that are working for a cure. The road has not been easy, and the cure has not come soon enough, for too many children and adults with this condition. Yet we must not give in, and sit on our laurels, but rather roll up our sleeves and make these discoveries continue to grow in abundance.

Tom Grooms, The Spectrum Show, and Cumulus Media

It was both an honor and privilege, to participate in a broadcast with Leigh Sutherland and Devar Burbage the other day, about Angelman Syndrome research on Tom Groom's show "The Spectrum." This show should be airing this weekend, at times still TBD, but even if one family gets information, then that is a battle won. Tom Grooms is one of the kindest men I've ever met. In this age of "move out of the lane," mentality, Tom stands out from this in stark contrast, as he has a golden heart. I greatly appreciate his compassion, and the fact that he gets back to a guy who uses an email account of toiletoctopus. Yet there's more than that, as he's been a strong supporter of Autism Speaks, and the autism community can greatly benefit from the work being funded by the Angelman Syndrome Foundation. Even those with epilepsy can, because a lot of the work on the UE83 proteins that might trigger seizures, and has been shown in people with autism, can one day get more answers and hopefully a cure.

The research at the University of North Carolina Chapel Hill, and other institutions is phenomenal. There they are creating mice with Angelman Syndrome, and using already FDA approved drugs to cure them of this condition. Now, that's not to say a cure is going to happen in 2013. Yet it is a established start, because a lot of medical discoveries, are started off in labs with rodents that I've become thankful for. Perhaps the next one in my house, will get an "official pardon." Seeing Leigh and Devar is always a joy, as they have fought for years, spending thousands of hours volunteering to help families out, and to find ways to generate awareness and fundraising for a cure. They've also been greatly supportive to our family, as while Tommy passed away due to an Angelman Syndrome seizure, they are people whom I trust very much so.

There are no words that I can type, that can convey how I thankful to both Tom Grooms, and Cumulus Media for allowing this opportunity. This holiday season has not been easy, as Tommy is on my mind and in my heart every single day. Yet for a few moments, going on air, it at least provides some hope. If just one family finds out their child has Angelman Syndrome, or if someone with scientific experience hears this and says "A ha!", that will be a beautiful moment indeed. WMAL 630 Woodbridge Washington, deserves a lot of credit for allowing such a show, that offers citizens an opportunity to bring much needed information to families around the D.C. Baltimore area, along with the rest of the country through podcasts and other technologies. Here is the information for the show:

http://www.mix1073fm.com/Article.asp?id=2308571

Thank you Tom, and one day may there be a cure for Angelman Syndrome, Autism, and Epilepsy.

The Holidays and Grief

The Christmas and Hanukkah seasons are upon us, and may they be full of cheer for people around the world. Yet there are some folks, who dread this time of year. That would be parents, grandparents, brothers, and sisters who have lost a child in their family. The empty seat at the Christmas table, or the spot where mazel tov! was yelled, can bring up painful memories from the past. The commercialization of the holidays brings further pain, and having to visit your little boy or girl at their gravestone, is heart wrenching even more so. Yet you've got to continue to celebrate the holidays. That's what everyone says right?

Our first Christmas without Tommy was beyond hard. We decided as a family, to do something that we had never done before. Looking back, this was a wise decision, and that was to go skiing on Christmas Day. The change of venue helped immensely, and being active in the outdoors offered some solace. Yes we felt the pain, but it would have been more so, if we hadn't gone to the ski resort instead of staying at home. Our pictures from that Christmas show smiles, but those only were masks, for what really was felt deep down.

Alcohol and foods can be your worst enemy. While I still only go out and get loaded occasionally on booze, after Tommy's passing I put on a lot of weight. It was a shocking amount, and while I still carry a few extra pounds, I warn parents going through the grieving process that this might be an outlet that is unproductive. Frankly, I just didn't care at the time, and ate whatever crappy foods were available, and I ate them in abundance. It was like waving my middle finger to the wind of health, and in retrospect perhaps I could have done something worse, but emotions of pain would trigger a desire to eat in large amounts.

This is a tough time, and there's no way around it. I've felt it this year, at Thanksgiving and with Christmas just around the corner. This year I am better "prepared" for the deluge of emotions, but they are there, along with the tears. I look at Tommy's younger brother, and I see him, which brings a small amount of happiness that cannot be explained in words. Seeing him smile at the Christmas lights, reminds me of the trips we used to take with Tommy, when he would be in awe of the displays. This Christmas will be fun, as we celebrate as a family, even though there is that empty seat at the table. The squash that Tommy loved so much will be eaten, and we will all miss seeing him go after the Christmas wrapping paper, that he played with for hours. Yet we carry on, as other families do at this time of year, and I wish you all the happiest of holidays. Merry Christmas.