Hillsborough Wine: Virginia's Finest and Epilepsy Awareness Day May 27 2012

"Be there or be square." From family lore, my grandmother used to have a dinner bell, and if you missed it, well there went your meal. I was lucky enough not to have missed a drink at Hillsborough Vineyards last year, as I found it by driving down the road, with my wife, brother, and mother-in-law. Our plan was to see Harper's Ferry, but as the rain continued to pour down, we were not able to see the home of John Brown's Raid, or a place that had much significance in the Civil War. Virginia and West Virginia, where that famous town is located, are of course a Civil War aficionado's dream. When I was a boy, I studied this area of history like so many others, and unlike my grandmother's dinner bell, I grew up in a slightly different era. I grew up in Fairfax, VA, home of many skirmishes during that period of time, but didn't have to worry about audible sounds. Rather, it was the streetlights coming on. Yes, I had to be home by the time they came on, and my parents approach to dinner was that it should be done as a family, but at least I was able to catch a late bite after looking for bullets from back in the day, or other artifacts. This would include turtles, snakes, and God knows what else from the woods, where houses now sit.

This day of our trip to Harpers Ferry, my wife noticed a vineyard on the side of the road. There are many in Virginia, especially Loudoun County. In fact, over the past few years, its an honor that the Commonwealth has become among the United States fastest and best growing wine regions. Watch our California and Washington State, we are nipping on your heels. The vineyard that day was Hillsborough , which can be found online at http://www.hillsboroughwine.com/. As a beer drinker primarily, I thought that the day was over, but discovered a lot. I learned about how wine is made, the differences between whites and reds, and most importantly in a friendly atmosphere. For whatever reason, wine has a intimidation factor. At Hillsborough Vineyards I found Bora and his staff, to be very kind, and open minded about my discovering of wines. Sure, I had various whites and reds at weddings and other occasions, but never had I gone to a tasting room. I would have never thought strolling a vineyard, and seeing the grapes, would be an experience that I would like to be a part of.

Yet as that man who sort of grew up from those woods of Virginia, it was fascinating to see the grapes growing, and also walk the gorgeous property. The views of the valley, the mountains where so much history did occur, that was a special day as the rain dissipated and the Red Onyx was tried. I fell in love with this sweet tasting drink immediately, and have since become a fan of this particular blend, and am going to try more. Hillsborough Vineyards has whites and reds, so whatever you fancy, its good to know that you can find what you are looking for there. They do have wine sold in stores, but it is so much fun going to their vineyard instead. There you can relax in their tasting room, learn from the winemakers what goes on to make that beverage so tasty, and about the history of this beverage that of course goes back thousands of years.

On May 27th 2012, from 11 a.m.-4 pm or thereabouts, be sure to stop by Hillsborough Vineyards. Whether you want to stay the whole day, or drop on by after seeing nearby historical locations such as Harpers Ferry, Antietam, or the beautiful Loudoun Countryside, this winery is beyond kind to host Epilepsy Awareness Day. There will be wine drinking, oh yes. There will be foods, oh yes. Also at the same time, there are going to be kind folks who are from the winery, there to help you pick out that delicious bottle of wine, and the tasting room is a place that is going to be full of joy. It is with profound kindness that the Baki family and their winery, have made this "Epilepsy Awareness Day". As most know, 4% of the general population contends with this affliction, and one in ten of us one day will have a seizure. Many of our family members, friends, and co-workers contend with this everyday, from having one occasionally to thousands of them a day. These seizures can greatly diminish one's quality of life, or take a child like my son Tommy, and so many more to God far too early. There are so many crying parents, so many relatives of a child that have cried tears and felt this anguish, and the folks at Hillsborough Vineyards want to fight seizures head on. They are being kind enough to host this event, and are donating proceeds to the Epilepsy Foundation of America.

So come on around, purchase some wine, and you will not only be savoring the taste of fine grapes. You will be meeting families that contend with epilepsy, the loving folks of the Baki family, and also helping children right now, who's parents are wondering "how can I help my little girl or boy more," or preventing another parent going down a road that no one should have to. 11/04/2009 is a day I will never get over, yet what keeps me going, is people with epilepsy. They have a condition that they battle every day, yet they fight, with passion and love, never giving up. As the Epilepsy Foundation's slogan is "Not Another Moment Lost to Seizures," these courageous souls deserve our best, and only 1/2 of 1% of U.S. medical research goes to epilepsy. Let's change that needle in the right direction a bit more, and at the same time, show our love of fine wine at Hillsborough Vineyards. A toast to the Baki Family, to their fine wines of which I look forward to drinking again, and bring out your family and friends to an event that will be nothing short of remarkable.

Angelman Syndrome: The Next Frontier: The Apollo Gemini Mercury Missions, Al Qaeda and the Egyptian Islamic Jihad? What?

This is an exciting time for those in the Angelman community. At the same time it is very stressful. There are twenty four applicants selected for a clinical trial in Tampa Florida, and all of our hearts, thoughts, and prayers should be with them. This is also a stressful time. Familes who have been close aren't so much anymore, and with the stretching of the calendar and endeavors of success, I am hoping that this will one day be nothing more than a molehill. Its up for all of us to believe in a higher power or not, regardless of whether you are Christian, Jewish, Muslim, Buddhist, Hindu, Sikh, or many of the other religions, organized or otherwise that exist. If you are an atheist, that is fine too. Christopher Hitchens, how can even the most faithful man not love him, and his provactive and inquistive questions? Last year we lost him of course, and I have lost a son to cardiac arrest, caused by seizures, caused by Angelman Syndrome. Every single day I pray, that no other parent or family has to go through this.

It took some time, deep reflection, and the change of many things, including hitting a reset button of sorts, by changing to a new church, exercising in new ways, and so many other avenues to come to the conclusion that my dreams for Tommy died on 11/04/2009. It wasn't easy to realize this. In fact, today's date is some 2 1/2 years later. This I am going to live with the rest of my life, as will other families who have lost a little boy or girl to Angelman Syndrome, or other conditions. None of us, I am sure, even on our worst days, would ever wish for a family to go through even one 1,000th of the pain such an event entails.

The two main charities in the US for Angelman Syndrome are FAST or ASF, ASF or FAST, however you like to put it. I support both, as I do any effort that generates awareness for this rare condition, that the vast majority of people have NEVER heard of. Even doctors. There are not enough families or people affected with this condition, to engage in fighting with each other, as this will lead to what can best be described in the Al Qaeda/Egyptian Islamic Jihad debacle. For those of you who are not familiar with what occured, first of all I'm glad just like people of any background, that Osama Bin Laden is fish food. Al Qaeda and the EIJ had an uncomfortable alliance, in that they had the same goals, and that was to kill "as many infidels as possible." This included people of all faiths, because in their view a Muslim who wasn't praying or died in the line of their terrorist attacks, was of no relevance anyway to their strategic goals.

Most of us should open our eyes, and have friends of all colors of the rainbow, all religions, and all countries. Angelman Syndrome doesn't discriminate. Al Qaeda and the EIJ failed, because there was too much division, finger pointing and spying on each other when none was needed, and too much mistrust. There was animosity, and in their case I'm glad for it. I'd be more than happy, just like any other sane person should be, to put a bullet right in Zawahiri or any of the remnant's foreheads. Yet, right now there is something important beckoning, and that is losing our eyes on the prize. My son rests six feet deep. It is my sincerest of beliefs that he is with Jesus, God, the Holy Spirit. To each their own though. If you do or don't believe in God or a higher power in any form, that is fine, but do not give up on our 24 brave angels, any future projects from the ASF or FAST, nor each other. We have a common enemy, and we may not all be friends, but by God, we must not let disagreements get in the way of progress.

In many ways the 24 going to Florida, are a lot like the Mercury 7, the Gemini 12, or the Apollo larger number of brave souls. They are going into uncharted territory, with their families who love them so much. We must support them, and help them in any way possible. At the same time, we cannot tear other angel families apart, for any reason. Handle disputes off line. I've been guilty myself of being feisty, if we could bottle the passion of Angelman families, I would, and copyright it. And thus be a rich, bald bastard and live in the Carribbean somewhere on my own island. Passion is good, yet when lots of parents, its not just one, but many feel as if they are not welcome, or are going to get ripped apart by a mob for whatever reason, there's a problem. I do not want to get directly involved in this. Yet I am saddened. I do not have any particular sides in this, but other than feeling sorry for so many families that love their angels, and want the drama to cease.

If the Americans and the Russians, in the hottest part of the cold war could come together for the joint Apollo-Soyuz mission, then by the grace of God angel parents can work together. Does it mean you have to get along? Nope, but the constant bashing and bickering, while the passion is good, does nothing to advance the cause. In fact, it hurts it. I've made no bones about it, I've let the folks at the ASF and FAST(their officials) know on back channels, that they need to put their foot down. Its your battle now. My family's battle is over. We will be more than happy to help out any angel family, to do what we can. Yet the bickering is causing tears and pain across this place we call Earth. We all have a common enemy. Angelman Syndrome. Instead of tearing apart each other, what do you say, its time we kick AS's ass?

Angelman Syndrome, the Families Amaze Me

Every time I have been at an event, with children and adults who have Angelman Syndrome, I am amazed by the level of compassion displayed. It could be anything from the Walkathons to other, smaller events, but the power of these families has lifted me up during my darkest of hours. Angels, as we all know, require around the clock, 24/7 care, and even though this is necessary, they have the heart of champions. Their parents, grandparents, and friends do too. Even with this economy, cut services that all have to contend with, there is a "can do attitude," that inspires so many. Twenty years ago the Angelman Syndrome Foundation at www.angelman.org was created, and what was once impossible, is now closer to reality than ever before. A cure or at least therapies that can help angels.

When the time comes, let's hope, let's pray, that the work of doctors and researchers around the world, can make this event happen. It doesn't matter what organization you belong to, that is involved in this effort, as everyone has their "pair of jeans" that they are most comfortable in. Rather what does, is supporting each other, giving researchers and others who knew our help, their support. A lot of them right now are working hard, and they specifically want, all of the enthusiasm that can be garnered, to be written to them, to folks in the pharmaceutical field, on social media, along with the conventional media that is still powerful. If that passion is lost, the work of a small group of people that over the years is simply unbelievable, do you really want it to go on the backburner?

I do not. We should not. Each and everyone of us, should be supporting each other, angel families, and also at the same time showing the passion that we have in a professional manner. We owe it to the children and adults who have this condition. It is imperative, now more than ever, as we get closer to these discoveries, to band together, and show the collective understanding that researchers and those working hard for a cure, need to see that we are walking hand in hand with them. The same goes for pharmaceutical groups, science based institutions, and your local representatives. They have got to constantly hear "Angelman Syndrome," until they all have discovered what this condition is, and are on board with us all. Angelman Syndrome is a condition that leads to loving people, and may we be more like them.

Tommy's Death Certificate-Seizure, Cardiac Arrest, Angelman Syndrome

I cannot look at my son's death certificate. It is far too painful, and it is tucked away in a closet, that is not used very often. While I do visit his grave, along with my family, and his rock memorial that was placed at his school, this piece of paper just opens up floodgates of emotion. Is his passing accepted? Yes, as much as it hurts, he certainly is with God, and a whole bunch of hearts, whether it be family, friends, or those who worked with Tommy over the years have been affected. There has been sorrow, but there have been profound acts of kindness, and a new view of life, with a focus on the possibilities. Each day is a blessing, and we must count each as that, even if it does bring the proverbial headaches that, life sometimes throws our way.

Recently, there have been astounding developments, with regards to Angelman Syndrome. Topoisomerase inhihibitors, as Dr. Philpot at the University of North Carolina Chapel Hill, might provide a cure or at the very least therapeutic help to those with this condition. These cancer fighting drugs are FDA approved, and although there have been years of frustration and love at the same time in the Angelman community, now is the time to focus on this. We owe it to our angels, those with us, those in Heaven, to speed up the process and cut through red tape, thus allowing for clinical trials to begin with all haste. It is up to us, the very essence of self-reliance, to make this happen. By showing those who have been involved in the research what this means, along with applying benevolent pressure to those in congress and in other agencies such as the FDA and the U.S. Department of Health and Human Services, we can get the ball rolling. Dr. Jonas Salk's once impossible feat of defeating Polio became possible, let's do the same with Angelman Syndrome.

Everyday, I wake up and try to seek out new possibilities. I do not want another parent of a child with Angelman Syndrome, or anyone for that matter, to go down the dark road of losing their little one. It is at times very lonely, painful, and it cuts right through your soul. Angelman Syndrome has caused so many children, parents, grandparents so much pain, and its a contributing factor to my son's passing. That's right, its personal, and until there is a cure, there must be absolutely no resting on laurels, no complacency, and only advancing this cause until the red tape is cleared away. We owe it to all of those with Angelman Syndrome, and their family and friends, nothing but the best. By contacting those who have been responsible for this research, and those who can expedite the clinical trials, we must give all we have.

Happy Birthday to the Angelman Syndrome Foundation

When the Angelman Syndrome Foundation at www.angelman.org was created, I was learning how to drive a car. Most of the time, this involved my parents, watching out as my sharp right or left turns caused various items in the car to become flying projectiles. 1992 was a fun year, as I had Biology class, of which I spent a good part of it, throwing basketballs made of notebook paper into an empty fish tank, that the teacher couldn't see high above the cabinets. My group of friends and I, defied physics with various stunts in cars that shouldn't have been done, including trying to impress the ladies, with efforts that didn't end up too well but are now quite amusing. Yes, the eye rolling occured even back then, as it does now, and I remember this was around the time that I for the first time saw people with special needs. I was uncomfortable. No, I did not harbor any ill feelings towards them, but our high school was a magnet school, for youth with various intellectual disabilities. I used to avoid these kids, as I just didn't know what to say, what to do, or how to act.

We have come a long way. The same school and the new generation, are incredible. Its night and day difference, and I had my introduction to a child with special needs with Tommy. Yes, receiving the diagnosis of Angelman Syndrome was devastating. It hurt so badly, to hear that I was now the father, of a child that was not going to play baseball, go fishing, or learn to become a history geek that I had so envisioned for him. Yet, I learned a lot from Tommy, and the most important lesson was compassion. He hugged and loved everyone, and its something I've tried to do much more. I miss him very much, as he went to God far too early in 2009, but his legacy lives on. His school was a place of refuge, where the administrators and teachers, everyone there, were passionate about children with intellectual disabilities. Young students, of elementary age "get it," as they are giving up their recess and lunch time, to partner up with kids who have Angelman Syndrome and other conditions. Those were my best subjects, and I am thankful that these young girls and boys are making such sacrifices. I tell them this on a regular basis, and it has been proven, to help so called "mainstream students," work with others who have disabilities.

So how does this correlate,  with the Angelman Syndrome Foundations birthday? Very simply, the ASF is without a doubt the biggest and most influencial organization with regards to this condition. While there are other groups, the ASF's research money, that has been raised with the love and help of parents, friends, and businesses, have just proven that with already FDA approved Cancer fighting drugs, to perhaps having a cure for not only Angelman Syndrome, but a whole host of conditions on the Autism Spectrum and elsewhere. Recently published in Nature, the most respected journal, the Angelman Syndrome Foundation and all of its staff, volunteers, and everyone who has partnered with it, supported it, should be proud of this incredible accomplishment. There has been agony and pain along the way, but just like the ASF has not given up on a cure, we should not either.

The reach of the Angelman Syndrome Foundation is impressive. Worldwide. Yet, what really makes me happy about the ASF, is the walks. These are where I have gone with Tommy, and with him in Heaven, missed but still in my heart. My first one was very painful, as I went with Tommy and my family, and cried nonstop. It hurt so bad, but at the same time, it was reassuring. I saw different generations of angels, and parents who had gone the distance. These pioneers greatly helped a then younger man, understand that I would be able to enjoy Tommy's accomplishments, even though there were certainly hoops to jump through. I am thankful to these parents, along with the ASF's support with IEP's, understanding more what Angelman Syndrome is, and for their passion in not only awareness, but in finding a cure.

I miss Tommy everyday. He lost his life to a seizure, but his legacy must go on. With the Angelman Syndrome Foundation it most certainly does, as I am excited about the upcoming walk this May outside of the D.C./Baltimore area. This year promises to be exciting, with Dr. Philpot's research being released even more, and other efforts by the ASF and other groups, who all want the cure that has been elusive, but is now closer than ever. 2012 promises to be by far the most exciting year for Angelman families, and if you would like to make a tax deductible donation, to the Angelman Syndrome Foundation, simply go to www.angelman.org. Be a part of something good, from the heart, and that is going to both help parents that get that diagnosis and need moral support, along with being on the cutting edge of research that promises to bring new changes to the world as it stands. Happy Birthday to the ASF, to its staff, and to all of the families who have been responsible for its creation. You have touched many hearts, and continue to be an organization, that all can be proud of.

Rocking the Purple: Suck Feizures Ski's 2012

Suck Feizures might sound harsh. Its meant to be. This facebook group, has folks with seizures, people who love someone with them, or has lost a loved one to seizures. It was created December 25, 2010 and has provided help and support to various epilepsy causes, both through awareness, and in generating funds for research. It has had a lot of amazing moments, and so much has been learned, that is hard to place a big star next to one event over the other. Yet this is the year, that we get together and ski. Feb 24-26 2012 is going to be both fun, and a period of reflection at Big Boulder Ski Resort.

"Epilepsy Awareness Weekend" it is, as the resort has been very kind, to help us make this possible. They are going to offer ski lessons, even adaptive ones if necessary, and two days of tubing, skiing, or boarding are going to be a lot of fun. It is a family friendly event, with ice cream socials, arts and crafts,free raffle, days out on the slopes, and of course an adult type of party at the Big Boulder Tavern on Saturday the 25th. Yup, the "red solo cup" from Toby Keith's song, are going to make their appearances. Designated drivers are already in place, so come one, come all, and show your spirit by wearing purple. That's right, the color of epilepsy awareness. It will not only be out at the slopes, but at the hotel, and the Big Boulder Tavern.

If you have any questions about this event, feel free to join "Suck Feizures", and although it might be too late to order the wonderful purple sweatshirts that a kind lady was able to make, its not too late to sign up for the trip. There are a few days left, to get a discount at the Comfort Inn right next to the resort in Whitehaven, PA, and this and the ridiculously low ski rates are due to Carmen, who understands the meaning of "rocking the purple." It is going to be a lot of fun, getting together, and seeing where this next adventure goes. This is about empowering those who have epilepsy or love someone with this condition, as 3% of the general population has this condition. Its time for it to go, and on the tops of the mountains in the Poconos, may that needle towards a cure move just a bit, and continue in that direction from there.

Vanderbilt Kennedy Center Angelman Seizure Research Project: Now is the Time

Dirt placed on my son's grave. Carrying my son in a casket, instead of on my shoulders, down the stairs leading to that place, where he is buried six feet deep. This is sadly not an isolated event, as other children with Angelman Syndrome, have gone to God far too early. Seizures are directly responsible for this, and they must be cured, because it is a moral battle that we are all in the trenches for. The pain of finding your own flesh and blood unresponsive, is beyond any words that can be placed in print, or typed on a computer screen. It is visceral, tearing apart the very essence of your soul, and there are children with Angelman Syndrome right now, who need your help. Angelman Syndrome is caused by a deletion of chromosome 15, and if Tommy was with us right now, he would be seven years old. Yet there are other angels right now, who are loved so very much by their families, in the ICU or having parents stay up all night with them, due to the vicious seizures that must be squashed.

There is a mom, sitting by her child at the hospital, praying that her son is going to somehow stop seizing up, while hospital staff crash teams respond to that room. A Dad is having to call 911, having found his daughter seizing up, and turning blue from a lack of oxygen. Grandparents with their little one that they are so fond of, are thinking "Is this the time?" Enough is enough, as even if an angel survives a seizure, the wiping out of developmental milestones, often years of work, is unacceptable. While most of the time children and adults with Angelman Syndrome do bounce back fairly well after seizures, why should they have to suffer through these? Why should their family members as well?

The Vanderbilt Kennedy Center in Nashville, TN offers hope. There is a Angelman Seizure Research Project that you can help with, by making a donation at http://kc.vanderbilt.edu/site/giving/. It is tax deductible, and by going down to the online giving area, you can just type in "other" Angelman Seizure Research Project. This is led by Dr. Kevin Haas, a neurologist, and several other researchers, including an angel mom who has much compassion and dedication to this endeavor, that deserves much more attention. Are you saying the Vanderbilt Kennedy Center sounds familiar? If so, it might be because you saw Darius Rucker's "Music From the Heart" during the 2011 Country Music Awards. There he performed with children with various conditions, and it was, if you haven't seen it, by all means go to youtube and watch this. You will have tears rolling down your face, but they are of the "good kind."

Children with Angelman Syndrome, are loved by so many. While my boy is no longer with us, I still very much love him, and love all the other children and adults affected by this condition. A simple hug at a walk or out on the town, mean a lot. There are always tears, but they are accompanied by a huge smile. Let's help these hugging, loving souls be free of the seizures that have caused them, and those who love them so much heartache. By donating to the Vanderbilt Kennedy Center's Angelman Seizure Project, you are making the possibilities of a child, not losing their abilities or life, far too early. http://kc.vanderbilt.edu/site/giving/. This is a organization, that you can donate, knowing that you might just save a life. What better cause, can there be than that?