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.

Friday, September 28, 2012

Dr Stormy Chamberlin's Research Shows Potential for Angelman Syndrome

Dr. Stormy Chamberlain has with the Angelman Syndrome Foundation's funding,  found a way to create stem cells from people with Angelman Syndrome. That's right, blood and saliva being used, so there is no use of embryo's or other controversial methods. This guarantees that cancer fighting drugs, that are believed to be useful for a cure or at the very least gains in research, can be tested before being used to have safety at the highest of standards. This breath taking work would not have been even conceivable just a few years ago, and marks progress that continue to grow at an exponential rate. If only Dr. Harry Angelman was alive to see this!

She is conducting research at the University of Connecticut. Her work is in conjunction with other pioneers, such as Dr. Benjamin Philpot. A link to what she is working on can be found here. It is extraordinary that the research continues to move on at such a quick pace, and that the Angelman Syndrome Foundation has been able to fund such efforts. This comes from the annual walks that take place across the United States every year in May, along with donations that come in through kind folks, businesses, and even from the international community. As shown by her work, Prader Willi Syndrome might also see some results here too. That is promising, as both that and Angelman Syndrome are related to chromosome 15 deletions.

As a man who misses his son, I am encouraged that families with an angel, have a better chance than ever. Is anything definitive? Not yet, but the signs are certainly bearing fruit, as recently cancer fighting drugs have shown potential in laboratories. For more information, go to, and see what the ASF is doing with this. They are working as much as possible, to fund research and have done well over the years in this regard. Their maturity, and the fact that you can check their transparent records on Charity Navigator, guarantees you that your hard earned money is going to a charity that believes in a maximum bang for the buck. There are other efforts underway, as there are other groups working on a cure, and all should be commended. Yet this one is showing a lot of headway, and should be appreciated as a serious step in the right direction.

Your Child Has Angelman Syndrome

"Your child has Angelman Syndrome." As you sit stunned in a doctor's office or hospital, your world is going to change 180 degrees. Through a Fish test(genetics), or via a clinical diagnosis, hearing these words is going to knock you back in your chair. If you feel as if you can't breathe, or that you've been kicked in the head, you are not alone. Its so shocking to find out that your little boy or girl has this condition, that is caused by a partial deletion of chromosome 15. All of your dreams are thrown out the window, and you will now enter different scenery than you had previously envisioned. My wife and I had that news given to us in 2004, and while our experience took us even further than that, I am pleased that the children and their parents who get this news, now have more resources than ever before.

Its hard to say how many children are born with Angelman Syndrome. Estimates range from the 1 in 10,000 to 1 in 15,000 number. Yet when you add that up, even though the odds may seem high, there are plenty of folks out there with you. You are more likely to hear this news than get hit by lightning, and facebook and other social media groups, have made the world a whole lot smaller since our boy Tommy was diagnosed that fateful day in 2004. Groups like the Angelman Syndrome Foundation( along with Foundation for Angelman Syndrome Therapeutics( are working around the clock for a cure. There are two huge projects, that involve different therapies involving the works of Dr. Philpot at UNC Chapel Hill, and Dr. Weeber at the University of Tampa. These aren't the only ones, but rather the most prominent, and there are other Angelman groups around the world that are working for a cure, and also generating awareness.

At the same time, in lieu of these foundations, there are efforts underway to study AS related seizures at Vanderbilt University's Kennedy Center, and international scientific studies in loads of countries. The chance for a cure improves each day, and while certainly not guaranteed, there are encouraging signs. Research funds are increasing at a rapid rate. Celebrities such as Don Harvey, Dave Henderson, and Colin Farrell have children with Angelman Syndrome. There are probably more. Others in Hollywood are getting behind efforts, and songwriter and American Idol Contestant Reggie Hamm has penned a beautiful book called "Angels and Idols." I fully recommend it, as he and his wife Yolanda, have been phenomenal to the entire Angelman Community. Each year they have a Bella Bash in Nashville, and I hope one day to get a chance to attend this. Here there is a huge concert, and it benefits those with this condition, and it is a huge support to families who contend with AS.

Dealing with a child who has this condition, is not a cakewalk at all. I'm not going to lie to you, as while the devastation of hearing this diagnosis is gut wrenching, there are going to medical issues that you will have to contend with. Yet an angel hug, that makes up for everything. Most angels live a long life, just like any other child on the block. A lot of them can walk, and with improvements in physical therapy and other school programs, the chances for success in that regard are high. My boy Tommy walked, and just like other children, they each have different capabilities compared to other children with the same diagnosis. Yet there is one thing all "angels" share. That is love. I have never seen a person with more love than an angel. Just sit down and look at your angels eyes, or get a hug from a child with Angelman Syndrome, and you will see that it is a spiritual experience.

In 2009 our dreams were crushed as Tommy passed away with a seizure. I often sit by his grave, wishing I could have done some things better. Yet, I have to carry on, and with that, I will not rest on my laurels until a cure is found. For those who have just found out, find refuge in other angel families, and more likely than not, you are close to one. Get involved and find each other. You will find a family that is part of yours, even if the other parents have a different last name. My wife and I are very appreciative of the support we received from other families, organizations working for a cure, and that are helping doctors discover new therapies and ways to contend with the seizures and other health effects related to AS.

There will be tears on your journey, whether its just finding out your child has Angelman Syndrome, that was discovered by Dr. Harry Angelman. Yet there will also be smiles. I promise you that. Angels are fun. True, until a cure is found, they will not be the star on the baseball field, or going to Harvard. Yet, I have had so much fun in swimming pools with angels, and I hope to soon get a chance to ride roller coasters with an angel. Their smiles, laughter, and fearless spirit, is something that I greatly admire. The families you meet, I wouldn't trade them for the world. Phenomenal folks, and I often just sit back in pure awe, even now, at how connected these families are, and also how society is changing for the better with regards to treating all people with the value that each life carries. People are praying for a cure, and doctors and researchers are working around the clock. Some of these researchers have children with AS. Multiple efforts are well established and underway, and one day may your angel, have that cure that they so richly deserve. Until then, shower them with love, and yourselves too, by understanding that the road you have been put upon is different, but you have a lot of fellow travelers along the way with you.

Tuesday, September 25, 2012

"What's a Parent Who's Lost a Child Supposed to Look Like?"

I hope my beloved wife Nani doesn't get the shotgun out for this, but she was quoted first with this statement, in the Washington Post. It is profound, and much like her, it is wise and based on sound judgment.  In the article about our ordeal with Tommy's passing, she talked about how a co-worker said, "You don't look like someone who lost a child." Her response that titles this piece is right, on so many levels. First of all, damn if I don't love her blunt but honest answer. Its frank, and gets rid of all the background noise, or the dancing that is done, to describe the process of what it is like.

There are millions of us who walk on this earth, who have been in this very position. We are around. Everywhere. In every country, every faith, every label that can be attached. I often wonder how that father I saw, when I was in the hospital with Tommy is doing. That doctor telling him, "We did everything we could," as he cried into his hands. I often think of other parents who have been down this road, or recently have experienced a pain that is best not endured but is. Often I think while driving at random places, and just reflect on what others are going through. What's the meaning of life? Honk.

I think of Tommy every single day. There's no doubt that these other parents, do the same. Coach Tony Dungy said it best with "I'm still grieving." Every day for the rest of our lives, my wife and I shall be. Yet we want to live. We want to continue on, even though our path has been bumpy, and continue to be productive citizens, and members of our communities. Anniversary dates are painful, and often we do not go out on those days. Looking at Tommy's pictures, bring wells of tears up, of what is missing in our lives. It hurts so much, and our family now has to contend with telling Tommy's younger brother about him.

Its up to each parent to decide what is best, but I believe strongly in honesty. The night that my boy asked about Tommy's handprint, I told him through tears, about who Tommy is, and how he made that picture. As he grows older, I'm going to tell him more, and there was an excellent article the other day about dealing with death and children. The approach was straightforward, as it was explain that whether its a fellow sibling or pet, to be upfront and say that they have passed away. They weren't put to sleep or have gone away, as that only leads to confusion, and a child wondering when they are coming back. Death is not the most easy subject, in fact it makes the telling of the birds and the bees quite easy. Yet it is imperative to acknowledge it, and explain to children with a ruler, that most people do live long lives.

My heart is always with families going through the loss of a child. While we may handle the tragic pain differently, a lot is the same. There is an understanding that goes far beyond words. Its instinctive, and it does not require any special gifts, just compassion and knowing what another grieving parent, grandparent, or sibling is going through. If you are ever wearing these shoes, do no harm to yourselves or others. Life won't be the same, it will be a "new different." Yet that does not mean it will be necessarily bad. In fact, I enjoy life still, even with the pain that sometimes tears at my heart strings. Each day is truly a blessing, and should be appreciated as such, because it is a gift to be alive, healthy, and full of energy.

Tuesday, September 18, 2012

General Ulysses Grant and Seizures: The Civil War History Link

Have you ever walked a civil war battlefield at night? If you haven't had the chance, I highly recommend it, as its not only a spiritual experience, but a way to remember the bloodshed that occurred 150 some years ago in the USA. This is just mere seconds in time ago, when compared to human history, and right now there is a child that is having hundreds of seizures today. In those days, survival rates for extreme cases of epilepsy weren't very good. All you have to know this is true, is to have seen the doctors equipment at the former Walter Reed Medical Center basement, or watch a movie such as "Dances with Wolves." Will this child die? Perhaps. Yet with medicines and diet plans such as the Ketogenic and others, the likelihood is less.

I'm happy this is the case. As a parent who lost a child to seizures, I do not want another parent to go down that road, with all of the pain associated with such a grave tragedy. Whole families have witnessed this pain, and been torn apart in so many ways, due to the horror experienced. Thousands of people die every year, across the United States and the rest of the world from seizures. There are 50,000+  deaths caused by seizures in the U.S. alone on an annual basis. If you think Civil War battles such as Antietam and Shiloh were deadly, you are correct. Here at the latter, this pivotal moment in history, General William Tecumseh Sherman approached General Ulysses S. Grant. His words were, "Well Grant, we've had the devils own day." Grant released smoke from his mouth, as he was smoking one of his cigars, and said " Yes, lick em' tomorrow though."

That's what we have to do with seizures. General Grant was correct, as we have had so many of our children, friends, and other loved ones died to them. Yet we must look forward, remembering our past, but fighting even harder together, never giving up for a moment. It would be easy to give up, and just say "its going to happen." Yes, there are going to be cases of that. However, we not only fail those who can be saved by adapting a losing approach, but so many family members, friends, and people who loved someone taken by this medical condition. So what do we do? First of all, we rally together by constantly applying pressure for government funding, as seizures deprive each person of the chance for life, liberty, and the pursuit of happiness. Also, we continue to work with private companies to develop research grants, and to support institutions that are working on this issue right now. There are countless ones, and with each day, more gains are coming. "Lick em tomorrow" indeed.

Monday, September 17, 2012

For Those Who've Lost a Child, Compassionate Friends and Other Resources

To each their own, with regards to handling the loss of a child. You are going to go through Anger. Denial. Depression. Bargaining. Acceptance. You will feel guilt, so many "what if's," that there's no way to count so high, and a plethora of emotions that cause you sleepless nights upon days of despair. I'm about three years in to my son's passing at age five, and not a day goes by, when I don't think about him. Tommy would be eight years old right now, in the second grade roughly, and I stopped by his grave today. I look at his younger brother, and often catch glimpses of him. These bring peace, along with tears of happiness.

Yet there are moments of temporary despair. It seems sometimes the floodgates open. This is especially true during anniversary dates. Tommy's date of birth July 21st, is a day that I spend away from others. November 4th is another one, that I choose to isolate myself, because it is the right thing to do. It is my duty to spend time with my family, and also necessary to, reflect quietly about Tommy's life with a cigar in my hand on the back patio. I often still think, why on earth am I still alive, why did he have to die, and what could have I done better. This pain will stay forever, I am convinced, but it has been a learning experience. One that I hope no one else has to go through, but one that many have done before, and others shall today or tomorrow. My heart is heavy for these folks, as they are going through an excruiating soul searching experience, that shall knock everything they've come to accept upside down.

A lot of younger folks, I'm a Generation Y guy I think, have told me that they like the computer, social media sites such as facebook and Tumblr. These are all cool, and I'm actually grateful for facebook and email, when Tommy passed away. I didn't want to see anyone, it would have just been too painful, and the messages of support and understanding meant a lot then, and still resonate with every footstep taken. Whether its the Millenials or Z's now, these are just labels, but young parents are going to lose their beloved son or daughter. It could come from a car accident, a illness, or a seizure. The way death rears its ugly head doesn't matter, as much as the pain that is caused by it. That is what you'll be forced to face right away, the shock and hurt, that accompany you along every moment that you are awake and asleep.

Compassionate Friends is for parents who have lost a child. They don't judge you. You can meet them at meetings if you like, as most areas have a chapter. Your belief in a higher power or not does not apply here, nor does anything at all, other than you are surrounded by a group of parents who have been in your shoes a bit. If going out isn't your thing, that's okay. On facebook, there's a compassionate friends group, along with one from the Elizabeth Kubler Foundation. These both have similar goals, although the EKR Foundation appears, to be going through a shake up at the administrative level. Hopefully that will be resolved soon.

You will never get over the death of your child. I have not, and never will. Even if I am lucky enough to live a long life, as a wrinkled, grey, ripped apart man, my heart will ache for my boy who's missed each and every day. That's okay, as that is the order of things, and I've got plenty of companions on this road. Looking at Tommy's younger brother, my boy who was once that little baby, has been helpful on so many levels. Who knows what the future holds, but life is a blessing each and everyday. Last night we were in Tommy's playroom, drawing ice cream trucks and motorcycles. Yes, the ice cream trucks have been drawn thousands of times. Yet that's okay, as its a reminder to appreciate the small things in life, even if they are that van that goes through the neighborhood during the summer months. I miss you Tommy, forever and always, but your memory lives on.

Thursday, September 6, 2012

To Bereaved Parents: You are Not Alone

Right now there are more people that have died throughout history, that live on the planet today. That's right, more than 7 billion folks, that currently occupy the little thing we call Earth. The world has become smaller, due to innovations such as the Internet, Facebook, and commercial flights that make what used to be unrealistic, a hop, skip, and a jump away. We live in amazing times, with medical and technological breakthroughs coming in at a dramatic pace. Yet there is a parent out there, right now, not only in the United States, but around our globe in pain. They have lost one of their children, and they think they are alone. Many parents who've been in this position, feel that sentiment. I felt that way when Tommy passed, that no one has ever gone through this. My wife, who is nothing but a saint, said it best when she said "What is the parent of a child who died supposed to look like?"

If you have gone through the passing of your beloved child recently, my heart is with you, as are a lot of folks who you'll get to know. God works in mysterious ways, and yes you'll be angry with the great spirit in the sky. There's no denying that, and although I have yet to be zapped by lightning, I think its more than okay to feel that way. You are not alone, as there are so many folks that have lost a child. How each person handles this, is unique, but the key is to accept that your life is going to be different, but it "doesn't necessarily have to suck." You won't get over it. You will get through it. That's the bottom line. Its going to be a road that leads to so many questions, and not many answers. Yet around you you will meet amazing people that will step up, and also there are so many of us, that with the inventions mentioned above, are with you every moment. While the child mortality rate has dropped with modern medicine thankfully, children are going to die. It could be anything from a car accident, cancer, seizures, or a host of ways.

There are support groups for the bereaved. These include folks such as Compassionate Friends. Here you can go, where people have gone down the same road, at least with having been preceded in death by their little one. There are of course other organizations, some are faith based, some are not, but the key is finding what fits for you. Compassionate Friends doesn't care if you are a believer or not, what your religion is, if you have one, any of those so called boxes. My experience with them isn't that extensive yet, but soon there will be an interview posted here. Do what helps you. The key is not to harm yourself or others, because if you are in that position, call for help. That used to have a stigma, but it does not anymore. Millions of people on Earth are with you. To those who are going through a recent loss, my heart is heavy for you, but I promise you, life is different but can be good again. Yes, there will always be tears. However, there will be smiles and lessons learned, and you shall get back in the saddle again.

Wednesday, September 5, 2012

My Impending Death

My impending death is hopefully a long time away. I hope to live until 100 years old, and at the very least, be a good husband, father, and a person who will carry on a positive spirit. Life has thrown me a lot of challenges, as all other human beings go through. Life. Its not an easy ride. In many ways, the grandmother from the movie "Parenthood," had it pinned down right with her quip about it "being like a roller coaster." Hang on to those bars, as it goes up and down, although it is with profound gratitude that its mostly up. Like many other fathers around the world, I have experienced the defeat in sports, missing a shot on that deer that had the eight points, or completely screwed up something of major importance. Just like many fathers, I have had a child precede me in death. Here I am typing away, and my son's grave is about two miles away. There are flowers on it, beautiful Oak trees that have wind chimes that sound peaceful, and a whole lot of other children buried next to my boy.

Often I wonder about these parents. Sometimes I see them, but often Tommy's burial spot is empty, in the appropriately named "Garden of Angels." There are sad glances and nods, but rarely is a word spoken, when those of us in this group are near each other. Its a basic understanding, and I am certain, that these same parents are so pained when they see a new burial area being prepared. Each time that happens, and its a fairly regular occurrence, I feel a sense of sadness for a family whom I do not know. My thoughts go to the shock of their loss, the great magnitude of tears upon tears, and the anger and depression that accompany such a jarring event. Often I think of them, having to take their little girl or boy, and place their casket into the white limousine that's at the funeral home there. Those five steps are heavy on your heart, as you put your child into that car, and follow it to the burial spots.

Whatever way I go, the death certificate will say something other than a broken heart, but that is what it should say. Yet, I owe it to my wife, my three year old, my family, and faith to soldier on. Often events bring back that terrible night of 11/04/2009, that will be forever be etched in our memories. An ambulance can remind me of the ride to the hospital, knowing full well that Tommy was gone. Driving by the hospital where he was pronounced dead, having held his hands as CPR was stopped, can cause immense pain. Seeing a little boy who looks like Tommy, with that beautiful blonde hair he had, brings up the past. It is a mixture of comfort and sadness, to be where he is buried. I wish that I could save every child, every family, from having to going through this difficulty. Yet I cannot. Its beyond my mere mortal power, that is limited in scope, and I had a tough time to accept that.

Dads and mom's around the world right now, are going through a shock, as they have found their child unresponsive, or got that dreaded phone call. It is such a blur of emotions, there are no words to describe them, other than having your world turned upside down. If I had a worst enemy, I would not wish this upon them. To families going through the pain of losing a child, I cannot promise an easy ride, because you will NEVER get over it. Yet you WILL get through it. Life is mysterious, yet I consider each and every day a blessing. I'm a happy man, even though, there will be that missing part. Yet after much reflection, I do appreciate life much more, and see it through new eyes. Eyes. I miss Tommy's blue eyes, as they had sparkles in them, and the smile and joy in his face can not be replaced. However, I am grateful for the lessons he taught me, our family, and people who are family that have a different last name. Life is truly to be embraced, and done so with gusto.

Operation Angel Quilt and Operation Angel Hug: Help Those in Need

While a lot of folks are focusing on the political slugfest between President Obama and Mitt Romney, the NFL season just around the corner, or back to school, people around the world are contending with Angelman Syndrome. The Internet and social media programs such as Facebook, have made the world a smaller place, and every girl or boy with Angelman Syndrome, along with their families deserve the best. It is with profound gratefulness, that two established 501 charities the Angelman Syndrome Foundation(, and Foundation for Angelman Syndrome Therapeutics(, are fighting so hard for research right now. They have empowered parents to gather information, generate awareness, connect with one another, and also show that they are a force to be reckoned with in advancing towards fair treatment for their child. These two organizations have done a fine job, in the endeavor of research, and we should all look up to what they are doing with Dr. Weeber at the University of Tampa, and Dr. Ben Philpot at the University of North Carolina.

Eileen Braun and Paula Evans started these organizations, and they are also both parents of children with Angelman Syndrome, a partial deletion of chromosome 15. Their efforts deserve a lot of credit, because they have taken the initative to stand up to Angelman Syndrome, and say "This deserves to be cured." While relatively rare, at one in 15,000 births or so, Angelman Syndrome has devastating effects to families, who are already struggling enough. A child with this condition, needs 24/7 medical attention, and the parents and "angels" as folks with this are called, truly do have halos. The deck of cards are often stacked against families who deal with Angelman Syndrome, yet their resolve and their willingness to defy staggering odds, often leads me to just sit back in sheer awe. While the ASF and FAST are two organizations that I am proud to support, and hope others will through volunteer efforts and donations, their focus is on research and education. That's the way it should be, but it does lead to frustration.

That's okay. The main focus should be research, as we are on the cutting edge, of a time where a chance for a cure is better than ever. Work at the chromosome level, and using FDA approved methods, the time is now. As for the frustration, it is parents from around the world, whom contend with regular ambulance trips due to seizures, and frequent trips to hospitals for short or extended periods of time. In some cases, and while not a comfortable subject, a child with Angelman Syndrome dies. It doesn't matter how they go, but it leaves a family faced with a journey that is too painful for words. There is a butterfly effect, and so many times angel families and others across the world, have stepped up in these terrible times. A parent sitting next to their child in ICU, if Norman Rockwell was still alive, he could paint that and it would be something that all would understand. Parents are in hospitals a lot, and have gotten used to helping their angel with doctors recover.

Eileen and Paula are both aware of this, and love families going through this. Their hearts are with them, but the ASF and FAST soldier on towards that cure. When a cure occurs, the constant hospitalizations, and ambulance trips with crying parents going "is this the time?", will no longer be an issue. There will be no parents picking out a casket for their cherished little one. Instead victory will have been achieved, and it is with prayers from so many, that this day comes sooner rather than later. Make no mistake, we are in a war for a cure. Its not up to the ASF and FAST exclusively of course, but parents who support these organizations and each other, along with researchers and universities doing breathtaking research. It has only been a few years since the DNA sequence has been discovered, but since then, it has led to astounding discoveries.

Yet there is a void, and I want to recognize Susan Salisbury Winfrey, as well as parents and people from around the world today. While the ASF and FAST have been fighting for a cure, which is the main goal, people like Susan, and I hope that she doesn't have that Oklahoma shotgun ready because she's a better shot than I am, should be commended for stepping up for Angel families across the world. Singlehandedly, she has been able to send gifts of comfort to those in hospitals. This is logistical nightmare. I do not know how she does it through Operation Angel Hug. Keeping up with so many children, whom regularly are going to hospitals, and out of the goodness out of her heart, I tip my heat. Facebook is helpful, as are other parents in making these connections when a child with Angelman is hospitalized for a long time, but its a daunting task. In many ways, there is no military "line of sight" available, due to no effective databases, and then there are issues such as Hippa(a good law), and other roadblocks that have to be contended with. These not only include where is the child, what's the address, does the family wish to be sent a gift as each person reacts differently, and so much more.

Operation Angel Quilt is the same. People from around the world, have shown so much love on this painful effort. None of us want to hear of a child dying. None of us want to go through such pain. Yet it happens. Even more so for children with Angelman Syndrome, than the general population. That cannot be denied, which is why a cure from Dr. Philpot, Weeber, or other researchers is needed. "When, not if," is the way it is, and even children with other conditions or none at all, die. Death is a part of life that all of us face, but it is so much more painful, when it involves a little one. Parents with kids whom have Angelman Syndrome, develop a bond that cannot be put into words. Their loss is Titanic in nature, and the Operation Angel Quilt, is a way that families can show parents going through the worst nightmare, that there is light at the end of the tunnel. Susan has done a fine job setting up this loving endeavor, and parents whom have experienced the loss of a child, feel so alone. Yet having a quilt if they desire, show up with other children with AS surrounding their little one in Heaven, in pictures is a cathartic moment for many. It is a quilt that can be looked upon with tears and smiles, or hugged in those moments of pain, when it cuts one's soul like a knife, and leads to heartbreak replaying itself over and over again.

Its an honor to support the ASF and FAST. Its likewise that way for Operation Angel Hug, and Operation Angel Quilt. In the Bible, and its not against people of other faiths, in Romans there is a section about people having different talents. So many people have brought up to the ASF, FAST, and other organizations, about having a database of angels, along with their parents information, language abilities, specialities, and it has yet to bear fruitition. This is no easy effort, as these groups just like others, are contending with what appears to be a small population of people, but there are thousands. While I do hope to see someone with the ability to generate a database, I am simply encouraged by Susan and those who have donated money and/or time with both Angel projects. They are sewing quilts, generating patches that show true love in a picture, and reaching out to one another. I will support all efforts that help families in hospitals or in those cases, where a family that is going through agony, needs a bit of a lift. Join Operation Angel Hug and Operation Angel Quilt. They are both fine ways of showing our support to one another, in good times, bad, and in the worst. These are how we can stay connected, and while we all wait for that day when a cure is established, until then may we be unified with our love towards one another.

Sunday, September 2, 2012

Sitting Down With Wilford "Beetus" Brimley to Discuss Angelman Syndrome

Disclaimer:**First of all, Diabetes is a serious medical condition, and this satire piece, is in no shape or form, to minimize the seriousness of it. I have family members with Diabetes, close friends, and witness what they go through on a near daily basis. It is yet another thing that we must cure, and my hearts and prayers are always with people affected by it. As for Wilford Brimley, I really like him. In fact, I've defended him from having Liberty Medical, from putting "imposters" in his stead, with those famous "diabeeetus" commercials during "The Price is Right." Absolutely outrageous to put someone else other than the man with the stache in there, and Wilford Brimley has been a champion for people with diabetes since the Dinosaur age. Finally, if the folks at Liberty or Beetus want to sue me for having this "faux interview", I'm worth all of about fifty cents.

I was intimidated to be sitting in that room in Florida. Yes the balmy, humid air made the mosquitos sweat outside the air conditioned building of Liberty Medical, but I was about to meet one person, that has had profound influence on my life. You can never prepare for these moments, no matter how tough you think you are, or that you have your game face on. Beneath the veneer is apprehension, and sweat trickled down my back. It was 1 p.m. on the clock. The seconds ticked away like hours, and even the kind lady from Liberty, who brought me chilled water and a sandwich, could not calm my rattled nerves. Wilford Brimley. The chance to meet none other than the very essence of masculinity, the studly man who has made women all over the world swoon, and to have this once in a lifetime opportunity to interview him made me nervous.

That towel helped wipe off the sweat. A commercial showing Mr. Beetus, with that famous scene where he is working on horse shoes, made me get even more antsy. The chair legs were shaking. Loosening up my tie, I tried to scour my notes. "Be Prepared". The Boy Scout motto kept being in my thoughts, as the minute hand turned on the clock, and the phones from the adjoining room rang off the hook. It was almost as if the walls were coming closer, like that famous garbage room scene from Star Wars, and there was no Luke Skywalker or Han Solo to save me. Yep, I was on my own, with perhaps the most famous man on the planet. Footsteps were heard. The hairs on the back of my neck stood up, and with trepidation, I tried to swallow, but just could not. That door opened, and Wilford Brimley was right in front of me. It took every bit of energy, to just stand up, shake his hand. Yet I could not look into his eyes, due to him being the alpha males of all, and virtually the apex predator of all ladies in the world with his panache.

Beetus looked at me up and down, and said, "Good morning." I didn't dare correct him, as he would have throttled me, and left me in a pile of rubble that the NTSB would have to investigate. "Uh Good morning Mr. Beetus." He was wearing his blue sweater, to exude that confidence that he has, and the walrus stache was fully groomed, to show that he was someone "who would not suffer fools easily." He asked for a few donuts, cracked a beer, and just downed it like a college student would at a frat party. Then, he simply crushed the can with his bare hands. After some pleasantries were exchanged, all on my part, he agreed to sit down and talk about Angelman Syndrome. He cracked his knuckles in a leather chair with cow horns that you'd see on an old Cadillac, and just glared in my direction. Here is a following transcript, and although I'm still taking numerous tranquilizers after this encounter, I'm thankful to Mr. Beetus for being involved.

Mike: M Beetus: Mr. B

M: "Mister Beetus, its a pleasure to see you today. Perhaps we can talk a bit. How's your day going?

Mr. B- "I just shoed ten horses, chased my pain in the cushion grandkids away from my O gauge train set, and put on ten ounces of Brut cologne to get rid of the cowpoke ugly cigar odors, how the heck do you think I'm doing?"

M: "Um...okay, I see your point. I came today to see what you knew about Angelman Syndrome."

Mr.B-"Angelman Syndrome? I've never heard of it, even though I just flew in first class on an airliner, and was extremely annoyed by the lack of leather in the plane. No cowboy hats, no Amp or Red Bull for me to drink, and that darned flight attendant made me put out my cigar. Excuse me, I'm Beetus, and I do whatever the heck I want to do. Got it?"

M: "Yes Mr. Beetus. Indeed. Angelman Syndrome is caused by a partial deletion of chromosome 15, and affects one in every 10-15,000 people. It leads to severe developmental delays, including limited to no speech, seizures, and although children with it generally have happy dispositions, don't you think we should find a cure.

Mr.B-"Well, don't mind my unruly manners, while I polish off my oversized belt buckle, but yeah. If I could run the Liberty Medical Bus over it, do you think it would help?"

M: "If it was only that easy. Actually there are a couple of organizations in the United States working for a cure right now."

Mr. B-"Great, so I gotta sit here with the cowpies on my ranch. What on earth are you talkin' about sunny? You young whippersnapper!!!!

M: "Mr. B, would you like a tranquilizer sir? There is the Angelman Syndrome Foundation( and FAST( that are sponsoring multiple research projects. But there are two mouse based ones, based on the works of Dr. Edwin Weeber at the University of Tampa, along with Dr. Ben Philpot at the University of North Carolina."

Mr.B-"Both southern schools, where I can wear my cowboy hat, ride a horse, and find a spitoon."

M: "Mr. B, please."

Mr.B-"That's excellent. Two shots in my revolver are better than one, is that what you are saying? If so, let me show you my trusty .357 magnum, that I'm ready to use at any given moment, especially towards those that put pictures up of me looking like a cat with a moustache, or a blasted walrus!"

M: "Mr. B, okay first point, that's right. But please, keep that trusty Colt in your holster where it belongs. You got the concept though, as having two projects that are working towards a cure, do have that type of chances. Its an improvement for sure, and let's hope that these provide therapeutic help or a cure for Angelman Syndrome."

Mr. B: "That seems as reasonable as shoeing my horses, but without those fancy Nike's you are wearing. A real man would wear cowboy boots ya little punk, don't you think? Where's that swagger in your step?"

M: "Mr. B, with all due respect, aren't you excited that a cure is closer than ever? Will you support their efforts, along with keeping up with Angelman research, at other institutions as well?"

Mr. B: "Yeah, I will. After I'm finished watching this western, I'll be sure to check it out. But its time for me to go, as there are plenty of ladies at South Beach ride now, looking for their stud of all studs to show up. So gotta roll, before I kick your tail where it belongs."

With that, Mr. B left the room. There was no "goodbye," not even a handshake. He is without a doubt, one of the most intimidating people I've ever met. Yet, he showed an interest, and the work going towards Angelman Syndrome, could have far reaching impacts for people contending with Alzheimers, Parkinson's, and a whole host of other medical conditions. Cancer fighting drugs are part of the process, along with other already FDA approved processes. It was sad to leave the empty room at Liberty Medical, and not even get Beetus's autograph, but the key is generating awareness for Angelman Syndrome, along with a cure. The fact that Beetus allowed me to leave the room, is perhaps a reward enough, because this man could simply destroy me with that upper body strength and bastion of masculinity that he's known for.