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

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

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

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

Monday, May 28, 2012

A Father and His Son



It goes against the natural order of things, to have to bury your own child. I am not alone on this, as many families across the USA, and around the world, have been in this exact same set of circumstances. Tommy left us in November of 2009, and there are not enough tears to fill up a bucket. As men, it is ingrained in us, whether biologically or otherwise, not to cry, but cry us men do. We may show our emotions in ways not seen, silently, or through other means, but behind closed doors, tears are shed. A few weeks ago Alex, pictured here, asked about a picture of his older brother's handprint that is on our bedroom wall. I was able to tell him "that's your brother's hand painting", before later on, bursting out in tears. It hurt so bad, but it is my duty to tell him everything about his brother, and what Tommy meant to all of us, as well as to so many other people, who were a part of his lives.

I'm thankful. Tommy lived five years on this Earth, but he walked tall. I am grateful to God that he was loved, and that not only our family, but countless family that we didn't know exist with other last names, were in his corner. Our family is thankful for those who continue to support us, and even in the pain, we continue to meet people who inspire us, and keep us moving forward. Walking tall. Yesterday at Hillsborough Vineyards we met so many more of these angels, and it is with profound thanks, to have drank some wine with them, along with helping a good cause. One particular moment stands out yesterday, and that's when Alex showed up. It was comforting to walk with him, down by the vines, where the grapes are procured for the manufacture of wine. The views, just walking with Tommy's younger brother, gave me a greater appreciation for all of the love I have witnessed, even amongst the trail of tears. This walk, and his kiss at the end, made it all that more sweet.

Today is Memorial Day. There are countless families, who miss their son or daughter, who protected our great nation, and allowed this event to take place. There are no words. I am thankful that I was able to walk with my little guy, who's looking more and more like Tommy everyday, down by those vines and just "take it all in." Twenty one gun salutes will be fired today across this great country, in honor of these families. I don't have the ability to do so, because frankly, I dont want to get locked up firing my handguns or rifles in the air in honor of them, from my front yard. Yet, I am in my heart. To all those men and women, and their families who sacrified, whom gave all, thank you for that opportunity for a simple man to walk with his boy, and just have "that moment." Life is a challenge each and every day, but it is so much better due to the wonderful families that continue to fight epilepsy with love, and to those brave souls who made yesterday possible. 21 guns in my heart, yesterday, today, and always.

Hillsborough Vineyards: Thank You and Let's Beat Epilepsy





Yesterday was "Epilepsy Awarness Day" at Hillsborough Vineyards in Purcellville, VA. http://www.hillsboroughwine.com/. From 11 am-5 pm, the winery not only had the traditional whites and reds, but it also had purple bunting, posters, and a kind man named Doug who sang and talked about the effect this medical condition has had, on people around the world. 5% of us have epilepsy. One in ten of us are going to have a seizure. Sadly only one half of one percent of U.S. medical funding goes to research. This work not only may cure seizures, that have caused people's quality of life to be curtailed, but has also led to the deaths of many. One of them is my son Tommy, who will never be forgotten, nor will the children of other parents, who've been in these shoes. All of us express our grief differently, and that is okay, but each parent I've talked to or met that has the same pair of sneakers, has said "they never want another person to go through such a nightmare."

It is with profound thanks, to Bora, Asli, and staff at this winery, to donate proceeds of yesterdays event to the National Epilepsy Foundation. (http://www.epilepsyfoundation.org) Their generosity is unbelievable, and since they posted it, I hope its okay to put it out there-25%. I was simply shocked, in a good way, of their profound kindness and decency, their willingness to not only host this event, but to give back to an organization that is helping with research and in so many other endeavors. Their family's kindness, this winery, reminds me of a quote from Coach Tony Dungy. "Your life is of significance if you have done something to help someone out." They have gone far beyond that, and if sports adages can be used with what they have done, they just scored a touchdown. A child, a parent, families will no doubt be helped by their generosity, and people at the event learned about this condition, and were kind enough to reach out as well.

All of the families yesterday at this event, a young man named Cyrus a handsome young man with a loving mom and dad, and grandparents, friends, it was inspiring to meet them. Virginia Civil War and other history are so close to this picturesque location, and I tip my hat to Nicole and crew, who had Haymarket invade Hillsborough with kindness yesterday. While none of us were sitting in a house of worship, it was a spiritual experience in many regards. Walking around the vines, taking in the views, and the slight breeze reminded us all that we must continue to conduct a battle of love against epilepsy. Too many people have suffered or are, and we are at that tipping point in medicine and biology, where we must continue to move our chess pieces in the proper position to make it happen. A life without seizures, no young children with their parents, brothers, and sisters contending with this pain, and people being able to live life to the fullest. That's what it is all about, and simply put, nothing else matters.


The wines were delicious. I cannot recommend a better place to get married then here, as they do offer wedding services at Hillsborough Vineyards. Also, I must say that the Red Onyx, Ruby, and Bloodstone were all met with a lot of approval by our folks whom were here. There are whites also, and to those who love wines, this is as some of the real "Virginia wine lovers," the most beautiful spot that many had seen. Its open from 11-5 daily, and the staff here, just makes you feel at home. Come as you are, and see for yourself, that Bora and his family, are going to welcome you to drink their fine wines inside the den, or out on the gorgeous patio. Oregon and California, other states in the Union, and places worldwide, watch out, as these wines are not only made with the finest of quality, but with love. Experience this passion, and again, all of us that contend with epilepsy or love someone with it, tip our hats to our friends here.

Sunday, May 20, 2012

Family Fun at Hillsborough Vineyards: May 27th 2012




Rock the Purple! That's right, the official color of Epilepsy Awareness. Millions of people across the United States, and around the world are affected by this condition. There have been advances, such as through institutions like Vanderbilt University, or government agencies such as the National Institutes of Health. Yet there is more work to be done. Raise a glass, or a bottle of what can only be described as delicious wine, that is readily available for purchase at Hillsborough Vineyards in Virginia. Google it or go to http://www.hillsboroughwine.com/, and by all means, stop by here on May 27th 2012 from 11am-5pm ish. Nothing but love for the Baki Family that owns this wonderful winery, that's on beautiful grounds, and offers views and lots of room to just relax for people of all ages. Its convenient to historical areas such as Harper's Ferry and Antietam, and you can just sit back and chill here, drinking some of their white or red wines, while just "taking in the views."

One in ten of us are going to have a seizure one day. The rate of seizures of those on the autism spectrum is alarming, and like many other parents across the globe, I have lost a son due to them. Tommy is missed every single day, as are children, who's parents on every continent often are. Its time to prevent at least one parent from going through this pain, a child from leaving too soon, or perhaps a child from losing his Mom or Dad from seizures. The Epilepsy Foundation of America's "Not Another Moment Lost to Seizures" is correct, and it is our moral imperative, with each generation, to leave this world a little bit better for the next. Steve Jobs was correct, that "biology and technology" are going to come together as never previously witnessed, to help advance the field of medicine, and deliver these cures that have eluded us for so long.

I never thought that a group of people, could pick up my spirits so much, after the passing of Tommy. That dreadful night of 11/04/2009 will never go away. There have been just so many tears. All of the flashing red lights from fire apparatus, our little boy on a bed with CPR stopped, and what can only be described as shock beyond comprehension. It has been painful, there is no doubt about that. Yet there also has been hope. I have seen and met so many people who have inspired me. "Carry on," their actions and what they say, that's what it is about. Fight with love. Indeed, some days are better than others, yet the steely resolve of these epilepsy warriors have made me not only stronger, but have brought a man's who's faith was broken, and healed it more than mere words can ever express. With thanks to them, profound gratefulness to people I have met, and yet to meet. You are family to our family, and the Baki's are gracious, kind, and loving. I tip my hat to them, as they have enthusiastically wanted to help the EFA and generate awareness to this condition, that affects so many families.

So come on out to this beautiful winery. The directions are all at http://www.hillsboroughwine.com/. Its again on May 27th, next Sunday 2012, and let's hope that the weather cooperates. If you are a fan of white wines or reds, they have award winning ones to choose from. I plan on kicking back with the Red Onyx, but whichever one you like, the grounds are beautiful, and its for a good cause. Virginia wines are really gaining attention, not only in the U.S., but around the world. Watch our California and Oregon, we are coming for you :). There is a reason that the wines from Hillsbourough have won so many awards, as they produce quality over quantity, and also with love. Let's show them our love, our purple, and by all means be wearing that color, and helping to generate enthusiasm, and just maybe save one life or have children and adults with this condition or whom love someone with it, just another chance to smile. Carry on, carry on, carry on.

Tuesday, May 15, 2012

Fight Epilepsy with a Glass of Wine, Heck Make it a Bottle







Hillsbourough Vineyards is the place to be on May 27th 2012. http://www.hillsboroughwine.com/. This winery is on pristine grounds in Loudoun County, close to historical spots such as Antietam Battlefield and Harpers Ferry, where the now famous John Brown Raid took place that led to bloodshed just about a decade later. There will be none of that on May 27th 2012, as rather the fields at this winery that certainly had civil war soldiers walking through it years ago, will now have warriors of a different type. That would be those who have epilepsy or love someone with this condition. According to the Epilepsy Foundation of America, the costs direct and indirect of this condition to the United States, is $17.6 billion dollars. That's right, with a "B.". Three million of our fellow citizens, contend with epilepsy, many of them going through hundreds, if not thousands of them a day. Some of our loved ones went to God far, far too early because of seizures.

November 4, 2009 is a day that will live in infamy for our family. Tommy Ethan Ross, age five, was found unresponsive in his bed due to a seizure. There were loud cries, that night will not leave one member of our family, his teachers, friends until we all go to our Creator. For all of the noise and pain associated with that night, its amazing how quiet it was when the coffin was closed upon him, before being put in a limo to his burial grounds. Yet this event isn't only about Tommy, although his spirit certainly has inspired us. Its more about those in the Epilepsy Community, a family really, who picked up our family, and put us on their shoulders. Carry on, fight on, but instead of anger, turn to love instead. The Hillsborough Vineyards is a family owned and operated winery, and they certainly have compassion, by sponsoring Epilepsy Awareness Day from 11 a.m.-5 pm. I'd like to thank all who were involved with setting this up, and the kindness of the Baki family, who will be on hand to meet so many with epilepsy that fight to be productive citizens every single day.

One in ten of us is going to have a seizure one day. Let's help the Epilepsy Foundation of America, by showing up to Hillsbourough Vineyards in Purcellville, VA on this date. I hope you'll get a chance to meet, those with epilepsy who continue to keep our family going. Every single day I think about them, and am so thankful for their courage, their resolve, and their never give up attitude. I truly love them, and consider them, regardless of their background or name, to be members of our family. This event is free to attend, proceeds from wine sales go to the Epilepsy Foundation of America, due to the generosity of the kind family that owns this beautiful location. Pictures do not do it justice, as strolling the grounds, and exploring their white and red wines is a great way to spend a day. There's a reason they've won numerous awards, and that is their dedication. Let's show them our love, that of those who rock the purple, and not only raise a toast to all who've fought epilepsy, but help make this condition a part of history.