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

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

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

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

Sunday, April 22, 2012

Hillsborough Wine: Fine Taste and Epilepsy Awareness Day May 27th 2012

Purcelville, VA is one of the prettiest spots of the Commonwealth of Virginia. Its a relaxing atmosphere, with the Blue Ridge Mountains, and I have to say that I've enjoyed spending time at Hillsborough Vineyards. I have drank wines before, obviously having very little hair and the ones left being gray, to prove that I am over 21 years of age. Yet I had never been to a winery before, and on my first visit, I was a little intimidated about the idea. Although I've smoked cigars for years, two a month the doc says is just fine, wines and those who produce them, often have a reputation for snobbery. Honestly I do not understand how this is the case, although there are some cigar smokers, who sneer at you if you dare to fire up a certain brand. Apparently, their cigar must smell like roses, and they are so ashamed that you did not use a Davidoff guillotine cutter instead of the store brand one. The horror!

Anyhow, Hillsborough Vineyards is a very friendly place. Family friendly as well, as the Baki family is very kind, and the staff do not have any snobbery in their blood at all. They are the opposite, in fact I felt at home, as soon as I stepped foot on their beautiful property. Truly gorgeous, I was thrilled by the views of the mountains, the grapes growing, and learning a bit about wine. Most of my experience has been with beer, so this was new territory, yet a visit here spurred my interest. The tasting room on site is a great place, unintimidating completely, to learn about wines in a friendly environment. All of the staff were kind, and although I would be laughed at if I wore my t-shirt that looks like a tuxedo, I was wearing slacks and a casual t-shirt. The groups of people on site were having a fine time, there were cheeses to try, along with my now loved Red Onyx wine. They have a variety of reds and whites, and the medals and awards simply say, this is quality over quantity. Everyone who has tried their wines, has spoken glowingly about them, and I am going for the Bloodstone batch the next visit. If you can get to their vineyard, that is the best, but if you go to, you can find out stores that sell their products.

Here is a picture I took of Hillsborough Vineyards. As a picture can "speak volumes", this family and their love of people and their wines, is remarkable in the beautiful part of Loudoun County, Virginia where you can spend a day here. This would have been the perfect spot, for Al Pacino and Robert Deniro to have that "coin flip" discussion in the movie Heat. It would have been a classier venue, and the accomodations are much more comfortable. On May 27th 2012 the Baki Family has been kind enough to have Epilepsy Awareness Day. This is going to be an incredible event. So many families not only in the D.C area, but around the world, have been affected by this condition. 2/3rds of epilepsy causes are undetermined, four percent of the population has this, and only 1/2 of 1% of U.S. medical research is devoted to this. If you want to meet a hero, there will be plenty of Epilepsy Warriors, who come from all walks of life, and are the very essence of being champions in their communities. They have given so much, and many of the new folks being diagnosed with epilepsy and the seizures resulting from it, are none other than soldiers returning from combat zones.

Many have been lost to seizures. The Epilepsy Foundation's slogan is "Not Another Moment Lost to Seizures." For my son Tommy, it is too late. He is with God, along with so many other children, that have given all they had, yet their legacy goes on. There have been so many tears on this journey, for families who have a loved one, whether its a parent, brother, or a son or daughter. If you are able to attend this event, you will meet epilepsy warriors, whom will inspire you. This Epilepsy Awareness Day is going to be informative, fun, and also a family friendly event that's going to be full of love. With thanks to the kindness of the Baki's and Hillsborough Vineyards, it is an honor to be amongst my heroes. Its a privilege, to be around those who refuse to waver, and instead go down the road less taken, to find a cure for seizures. May 27th 2012 at 11 am-5 p.m., be there and raise a glass, and help defeat this menace with an outpouring of fine wine and lots of love.

Friday, April 20, 2012

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 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.

Friday, April 13, 2012

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?