National Hemophilia Foundation's 68th Annual Meeting (NHF 2016)

The entrance the annual NHF conference at Gaylord Palms.

The NHF annual conference is designed to connect both patient and caregivers to the industry leaders among the pharmaceutical companies and the physicians who treat hemophilia. This year's annual conference was held at the 'Gaylord Palms Hotel & Resort' in Orlando, Florida, and kicked off a three day event on Thursday July 21st-23rd, 2016. For the first time, the NHF conference lead into the World Federation of Hemophilia (WFH 2016) conference, which is a global initiative to see seek "Treatment for All." WFH unites global hemophilia chapters, bringing together scientists, physicians, patients and caregivers from across the globe with a 4 day conference.

Joseph & Alexandra Burke with Jeanne White-Ginder, Ryan White's mother.

This year, was very emotional and there was a sense of spiritual connectivity among fellow hemophiliac survivors. A fresh sense of rebirth is awakening among the bleeding disorder community, as new treatments not only for bleeding disorders are on the horizon, but breakthroughs in HIV and Hepatitis C therapies have given the community a 'Burst of Life.' More and more hemophiliacs who were affected by the pharmaceutical tragedies of the 1980's are being cured of HCV, and thus the mortality rates among the bleeding disorder community among that generation of bleeders have significantly been reduced. I had the honor to hear Ryan White's beloved mother, Jeanne White-Ginder speak at the conference on the realities behind the scenes during Ryan's media bombardment of the late 80's and early 90's. She recalled fond memories of Grammy winning musician Elton John staying by Jeanne's side during Ryan's final hours, to a heartfelt phone call from the 'King of Pop,' Michael Jackson. What a strong and humble woman Jeanne is, a true beacon of hope and light among the bleeding disorder community. For me personally, this journey has in many ways come full circle, as I now realize my role and plan of action in my own steps toward hemophilia, HIV and HCV advocacy.

Joseph & Alexandra Burke with Clifford & Louise Ray.

I also had the distinct honor of meeting another ambassador of the hemophilia community, Louise Ray. Mother of Ricky, Bobby and Randy Ray, many can remember the horrific news media coverage of their home being burned in Arcadia, FL because of the AIDS scare in the 1980's. They've endured so much, and today only Randy Ray survives, carrying the torch for his two brothers. The bond between the Rays and Whites is strong, and their story echoes the senseless tragedies and dark ages of the pharmaceutical industry among the bleeding disorder communities. It was very emotional for me as a patient and now advocate to hear their stories of enduring, which ignites my own passion and fire to educate the world that, "We've Come So Far, But Not Far Enough."

Alexandra looks at artwork in the Blood Works Gallery
from her husband Joseph Burke.

A special blessing was having several of my paintings featured for the second year in a row at the gallery of "Blood Works."The gallery is composed from submissions only from the bleeding disorders community, and highlights the artistic creativity that thrives among those living with hemophilia or Von-Willebrands disease. I even had three songs on the "Blood Vibrations: 5 (Blood Work Mixtape)."I want to give a huge shout out to Justin Levesque from Maine, who organized and coordinated the Blood Work gallery exhibit during NHF's 68th Annual meeting. Justin is from FOLX, which "aims to support positive physical & mental health outcomes for people in the bleeding disorders community from diverse backgrounds."Again, great job Justin!

Joseph & Alexandra's Artwork Piece during "Couples Art Therapy."

One of the sessions on the final day of NHF was "Couples Art Therapy." The session allowed couples to dive inside the dark portions of living with hemophilia, yet focusing on the hope of a brighter future. The class was open for interpretation, and allowed couples to create works of art that depicted their dreams and ambitions together. My wife Alexandra and I had so much fun putting together this piece that overlapped our hands, while putting our faith in God at the center of our lives. We got several really heartfelt comments from participants and officiants of the session on our idea. It is our hope for me to be cured of HIV, and remain thriving for God and each other. A testament to enduring the hardships of life, and achieving favor in the eyes of your spouse. This session was very unique, and in-depth, and allowed couples to artistically reveal what their hearts and minds are truly saying about living with a bleeding disorder, or caring for someone with the disease.

For more pictures from NHF 2016, please see the official album below from my I Strive 2 Thrive Facebook Page.

The Uncomfortable Subject; Bullying

Writing this article is very difficult. I'm revisiting old wounds that I've long moved past from, but I'm doing so to raise awareness to stop bullying. My local television station here in Orlando WESH2 is dedicating an entire week to raise awareness of bullying, cyber-bullying and beyond; which is hosted by anchor Jim Payne. In light of this week, I feel it is necessary to open up about my scarred past and encounters with multiple bullies during my elementary and high school years back in Kentucky.

Growing up sickly immediately raises the bar for any child going to school. Being born with Hemophilia Type-A severe, which means less than 1% of clotting factor in my body, I had no idea what was in store for me in the years ahead. By age three I contracted both HIV and Hepatitis C from contaminated Hemophilia blood products from Cutter Pharmaceuticals in the mid 1980's. Much like the stories of national news headlines of Ryan White and Ricky Ray, I too faced mountains of discrimination and bullying.

Being a hemophiliac, I bruise easily, so being like any kid, playing in the dirt, on my bicycle in my back yard at home, I acquired tiny bruises all over my arms and legs. There were times my parent's own care at home was questioned by the school board, but thankfully they quickly realized I was a hemophiliac and understood. But some of my fellow peers in school didn't understand the term bleeder or hemophiliac, and in that misunderstanding, lashed out at me because of my differences.

By age 8, I developed what doctors called a target joint as a hemophiliac, my right knee was injured around 3rd grade and I formed a noticeable limp. I was mocked, pushed out the way, butted out line in the cafeteria, and nicknamed "bruise." I will not mention names, nor will I ever, but about five of my male classmates developed a sport of mocking me in front of my entire class when the teacher would leave the classroom for any manner of time. Trash was thrown at me, and yet I kept going.

Bruise, cripple, peg-leg, hop-a-long were just a few of the names. But then, later in high school, the bullying increased, and verbal mockery became physical mockery. My books were knocked out of my hands, thrown down the hallways, purposely tripped and I was slammed in lockers. At one point, my entire right arm from shoulder to elbow was one massive bruise from the physical bullying. The only solace I found was in a handful of friends who were all girls. I found out that girls didn't mock or bully, so I hung around them as much as I could to escape any interactions with those that bully me.

Many nights, I would come home from school, close the door to my bedroom and cry silently in the pillow so my parents wouldn't hear my pain. I cried out to God, "Why do I have to be so different? Why did you make me a cripple to be made fun of?" The pain of those moments was incomprehensible. The dichotomy of my life from a loving home life, to being bullied waged a mental war within me that took me years to decipher.

There were moments in which I questioned the value of my own life. Why do I have to suffer so much pain mentally and physically? Why do people not understand me? Why does my body hurt and bruise every single day of my life? Why do my joints swell four times their normal size? Why do I bruise at the simple bump or flick of a finger? There were many times, I just wanted it all to end, my life included. For some reason, death didn't scare me, mainly because I encountered so much hate and anger in my own life. The only thing that kept me sane during all of this was the love of my parents.

The veracity of the situation molded me into the man I am today. I know what it's like being "that kid" in school. I know what it's like soaking your pillow with tears from not understanding life. As a man today, I see that God had a perfect plan for my life.

Looking back now, as an adult, I forgive each and every one of those individuals that did wrong to me. I don't hold grudges against any of them, and I pray they find the goodness of God and feel the joy that I have in my soul if they haven't already.

Unfortunately for me, I had to be thrown into an adult world at a very early age, and the responsibilities of taking my medicine on time, keeping up with my home IV's and being extremely cautious of my surroundings at all times molded me to become the very observant person I am today. Name bashing get's one nowhere in life, it only lowers us to the level of expectations of the source. What's the old saying, “Sticks and stones may break my bones, but names can never hurt me?” So true.

My message to those bullied, your life is so precious. God crafted you perfectly for a purpose, and even though right now you may not know that purpose, you're still one of His. We all have to live with the choices we make, good and bad, but you also have the power to change lives and do good. Sure I cried in pillows and questioned my creator for the hand He dealt me. Don't be bullied into silence, and left to deal with this alone, and never allow yourself to be the victim. Accept no one's definition of your life, thus do not be defined by what others say you are. I was called cripple so many times, but I realized I am not my disease.

It's estimated that over 160,000 children stay home from school daily, simply to avoid the bullying. Don't let small people reduce your great worth. Reach out, talk to a teacher, talk to a counselor or church pastor. You will get through this season of life, and shine brighter than any star the heavens have ever seen. You can do it if I can do it. I'm not defined by words, rather by my Savior Jesus Christ who molded me perfectly. Ephesians 2:10 says, "For we are his workmanship, created in Christ Jesus for good works, which God prepared beforehand, that we should walk in them." I am not my disease, I am a child of the one true King. I am Joe Burke.

The Modern Shaman - A Blue Man Reflection

It's 2000, we just survived #Y2K and I just turned 20 years old attending a small local community college in South Eastern Kentucky. Scouring the universe over to find who I was in this vast world, where I fit in and my place. I began many months of soul searching, reaching and with very little luck. I found a few musical genres that motivated me to be creative in the music of Greek composer Vangelis, though I strayed from the modern radio hits of the early 2000's. Living in Appalachia, deep in the Kentucky wilderness and in a small rural town with a population less than 2,500, my mind and heart was envisioning myself beyond the realm of my 4-walled room with my parents at the time. The room became a creative playground for composing music, designing graphics and late night Yahoo Voice Chats with some now long forgotten friends and usernames. But the room was just as much of a prison as it was a creative playground for discovery of the world beyond the 4-walls in Kentucky.

Being born a hemophiliac, by age two I contracted HIV and Hepatitis C viruses through contaminated blood products that were supposed to treat my hemophilia. I spent my life in sheltered privacy, secrecy in rural Kentucky in fear of my family being rejected by society and blacklisted from the community. Much like the headlines of the late 80's and early 90's, Ryan White became the poster child for the AIDS epidemic, and sadly died before he reached his 20's. Even though I didn't face the adversities Ryan faced, my fate was still uncertain and was living in the fear of my own mortality. Somehow, by God's Grace, I was spared and lived through the Hemophilia Holocaust that claimed the lives of over 12,000 Hemophiliacs in the United States. I spent a great deal of my later teens and early twenties searching for my own purpose, my own path and where I fit in to the grand scale of things. Why was I still alive? Why was I spared and lived past age 18, even though the doctor's at the time predicted my death before then? Thus so unraveled the mystery that was my life.

It was around late 1999 that I caught a glimpse of something on Late Night Television that would literally alter the next 14 years of my life. Being a fan of "The Tonight Show with Jay Leno," I caught glimpse of something that I could not quite explain, yet was intrigued with childlike innocence. What appeared to be clowns or mimes completely covered in blue paint with black apparel were advertised on the local news segment with Jay announcing the nightly show ahead. Kind of like teasers to tune in after the late night news. I didn't catch their name at first, but stayed awake that night to see what these guys would do as a musical act on Jay's show. I was immediately amazed, mesmerized and captivated at the trio of men who were making these melodic tones, and the tribal essence of the show carried my mind away. Blue Man Group was their name, and immediately after the show was over, I logged online to search who these guys were. I found their web site, but no video content or footage to keep my inspired brain going. I must have stayed awake until 4AM that night searching the web for more clips of these blue guys, but sadly, nothing. This was an era long before YouTube had risen to the scene, so video content was not only more rare to find online, it was impossible to find more clips of Blue Man Group particularly. A few months later in Summer 2000, I registered the username 'rotcav' on the official blueman.com message boards [BMMB] and dove into their their fan world conversations.

In the weeks to come, I watched more live performances of Blue Man Group on the Tonight Show including a Christmas performance of their piece titled "Rods and Cones." The music, the energy, the mystique, the tribal percussion and nuance blew me away into another dimension of creativity. I was so inspired that on February 14th, 2001 I registered the domain name www.bluemanlibrary.com to start archiving these recordings on VHS I was collecting from February 2001's 43rd Annual Grammy Awards all the way up to random performances on other late night talk shows, daytime television and beyond. Their message board community became the centralized hub for all things Blue Man Group related, and that's where we found out when their next television performance was going to be. Remember, we had no YouTube and no archival footage yet to revisit these moments other than our own personal VHS home recordings from television.

In 2001, The [BML] or Blue Man Library became the official fan base for Blue Man Group. It was called "Library" for a reason, housing freely downloadable video content at a time before streaming video networks like YouTube, Vimeo and UStream were even accessible online. The web site not only become fan central for downloadable content, but a message board and live chat room were available which allowed fans a more live and "in the moment" way of connecting and sharing their own experiences with Blue Man Group. It was the highlight of my day logging online every morning and seeing what's new in the world of blue, updating the BML and interacting with the fans. In many ways, the fans became an extended family, allowing me to reach further beyond the 4-walls of my bedroom, and eventually to major cities across the United States. With planned late night chat room sessions, fans expressively talked about their passions, and opened up to new friends and new avenues. At a time before the Blue Man fan could watch streaming video online, there was BML.

In July 2001, I had planned my first gathering of fans in Chicago for what would in later years be called a "fan meet." Fans from the online community would meet in a Blue Man venue city, (at the time NYC, Boston, Chicago and Las Vegas), and do meet ups. It was around this time that a blue man actor with the nickname "Boomer" reached out to me from Chicago and congratulated me on my success at the BML. It was the first time I had heard from someone from the "inside" of the company, and I felt so honored. For over a year and a half, I had been sitting at home watching television and dreaming of seeing my first show. Now, for the first time in my life, I got to do just that and make a memory that would last me a lifetime of joy. Small town Kentucky boy had finally branched out, traveled on a plane for the first time, and went to a major metropolitan city. It became an awakening experience, and something I knew later in life would bring me great joy.

What was it about these blue guys that captivated me so well? Was it the fact they never spoke? Was it the incredible musicianship they carried, or was it the tribal instinct and their almost shaman like quality that allowed us as spectators to be swept away for 2 hours in their world? I think it was a little of everything honestly, and the fan base fueled my drive even more to plan more events, charities, contests, giveaways, fan meets and eventually snowball events into my life that would change me forever. One of the greatest gifts Blue Man Group gave me was the escapism from my complex and difficult life living with Hemophilia, Hepatitis C and HIV. Coming from a world of spending half of my life in hospitals and surrounded by fear and uncertainty, they gave me that outlet of allowing me to escape my life, and became the shaman in my life to usher in creativity, artistic mindsets, vivid imaginative thinking and an era of my life that I still feel was my most creative period. For that, I'll be eternally grateful.

7 years later, over 60 blue man shows under my belt, over 120 Switchback Podcasts later, having visited over a dozen cities on my many travels to see Blue Man Group, events were about to unfold that would be life changing. By 2008, I had formed a friendship with a fan from the online community from Atlanta, GA. Mike Ippolito connected with me through my radio program on WMMT-FM every week known locally as Crossroads. He and I had talked back and forth for over a year and a half online and one day he visited me in Kentucky and joined me on the radio show. I never realized that visit would change my path forever and that God was using Mike to help make a change in one man's life that needed it. Mike's father had recently passed, and he found solace in my radio show each week and called me regularly on the show to request some 80's songs. Mike and I grown as very close friends through the time of his family's loss, and hence why the visit to Kentucky to see me, and get away from his own struggles at the time. Before Mike left Kentucky, he handed me an envelope and a framed artwork with a poem. As I read the poem, it was all I could do to keep it together. It was very touching and very sincere. After Mike had left Kentucky and was making his way back to Atlanta, I opened the envelope and in it was a free ticket to see Blue Man Group Orlando, the newest and latest venue at the time here in the US. I was bewildered, dumbstruck and at a loss for words but storming with emotion. I called Mike on his cell phone, and explained he didn't have to do that, but his reply, "Please, it's my gift to you, for being the gift to me through your friendship." Yet again I was at a loss for words. Weeks later, I began planning a July 2008 Orlando Summer fan meet and using Mike's ticket. Planning was well under way, and yet again, Joe was traveling to a new city, the theme park capital of the world.

They say that love often comes unexpected, a surprise and when you least expect it. This is true for me on so many accounts, I can't begin to delve into it's madness of logic. It was at this fan meet, through BML, from Mike's friendship, by his tickets and my planning of this Orlando Fan Meet, I met Alexandra Irick. Not only was it love at first sight, but it was one of those moments in life that knocks you flat on your face and rocks you to your very core. Even though we fell madly in love that weekend in Orlando, fear of when we could see each other again echoed in the back of both our minds. Alexandra lived in Cape Coral, Florida and I still lived with my parents back in Kentucky. We did manage to plan other blue man fan meets together, and after only one month of dating, I placed a promise ring on her finger at the August, 2008 Chicago Fan Meet just one month after Orlando. 2 months later, our love grew even more and it was time for me as a man to make a stand and propose to Alexandra as my wife. We were engaged on October 23rd, 2008. I did what everyone in my life thought impossible, I became engaged to the soul mate of my life. By 2009, we both relocated to Orlando together and began planning our wedding on 10-10-10.

My friend Mike became the best man at my own wedding and his two wonderful children were a part of it as well. Fate, destiny and God's plan is a force to be reckoned with sometimes, and looking back through the past 14 years, would I have a wife, be living in paradise and thriving had not I made the BML or fell in love with Blue Man Group in 1999? It's almost like the movie "The Butterfly Effect," what would have happened if I didn't pursue Blue Man Group like I had? Life long friendships, a wife, a home outside Orlando, an amazing home church, and a life I only could dream about back in Kentucky would have never been revealed. It's funny sometimes how life wields you avenues, intersections and open doors. You either walk through them, or am left wondering "what if" for the rest of your life. Some would look at the events of my life and call it luck, predestination or just chance. Being a strong man of faith, I know beyond any doubt these events have been masterminded by God from the very beginning. I needed to connect with people outside of Kentucky, so he gave me BML. I needed to be adventurous and travel the nation, so he gave me means to do that. I needed a way to forget my complicated medical lifestyle, and for a short time focus on pure bliss and wonder, so he gave me Blue Man Group and all the many friends that come along with them. What was said to be impossible was made possible by God's own Handiwork. I did marry, I did start my own life away from my prison of the 4-walled bedroom and now in my mid-30's am given the opportunity to thrive in Central Florida. I'm not a success story, I'm God's Testimony that He molded within me many years ago.

Today, I rarely see a Blue Man Group show. Somewhere between technology and the tribal shamanistic vibe of the older show that I fell in love with, the essence and wonder of the show today is lost in translation with over-digitized animations and material that is lackluster in comparison to yesteryear. Little room is left for the performance aspect, and the music doesn't meets the standard Blue Man Group set for themselves with the release of their first album, "AUDIO." With age, my love for Blue Man has faded year by year, and I'm not sure why that is. I still am captivated by a sense of wonder, amazement and mysteriousness, just not by the caliber of the show the company produces today. I vowed never to organize another fan gathering due to differences and preferences set by other fans of the once thriving online community. I don't need drama, I just need peace. Will I ever attend another Blue Man related event? Who knows, I never will say never. It's so sad to see the grass roots company I fell in love with over a decade ago, fade away among the limelight of corporate jargon and hierarchical structure. Perhaps that is truly a sign to move on, away from my beloved journey shamans to new paths, new friends and new adventures with my amazing wife. One thing will never change, the friendships I've made through being a fan will last me the rest of my life.

Perhaps, in just one fleeting moment, members of Blue Man Group read this blog and feel convicted by my story, remember this one thing from your once largest fan, biggest supporter and  friend, go back to the start. See the world again from the eyes of a blue man and capture that childlike nature that inspired so many of us. We don't need things like Gi-Pads, pre-recorded animations and background tracks, we need the passion that once resonated from the performers on stage. Scale down the tech glitz, and grass feed your creative side with the eyes of the innocent once again. I am not being negative to the company, it's founders or creative minds that make the show what it is today, I'm just saying, something vital has been lost in the show and characters on stage. I used to be part of their creative process known as "The Insiders." Sure I got to meet the three original founding members of Blue Man Group Chris Wink, Phil Stanton and Matt Goldman, but I wonder if they or the ones that work under them now truly care anymore? Creativity is a blessing, and I love moving things in forward motion, but lately their material is setting them even further in a reverse motion. Sure, Alexandra and I became "Insiders," but we always had red tape, hurdles and loopholes in everything we did internally. In many ways I wish I denied the offer to be an Insider, and moved on with my life to save me the embarrassment. I felt frowned upon because we truly were never accepted by the company we worked for. We were still fans in their eyes, and a fan is someone who buys tickets to keep their shows going. The left hand never knew what the right hand was doing. I am deeply grateful for the Insiders project and all the many travels I got to do in the two years with Blue Man Productions. But now we're outsiders left wondering what's happening on the inside? Anymore, I prefer to not be associated with the BMG fan community, just because of the of the stigma that comes with being known at the box office as a "super fan." Maybe I need to remove the goggles from my own eyes, and see the evolution of Blue Man for today's newer fans? At any rate, thanks for the ride, 14 years, a wife, a lifetime of friends, world of memories, miles of travel and being the torch that broke the chains for this ole Kentucky boy.

Blue Man Group's 20th Year on Off-Broadway in New York City fan meet celebration.

Day 113, Ryan White's Mother Remembers 25 Years Later

25 years later, we've come so far in, but still have so far to go in terms of progress. Roughly 12,000 Hemophiliacs in the early 80's were diagnosed with HIV/AIDS, and Ryan White became a national icon for news media and press during his struggles and battles in his home town to overcome the stigma of his illness, and the ignorance of so many against the White family. Thanks for all you do Jeanne White-Ginder, and thanks for being a voice over the past 25 years for so many who don't or can't.