Saturday, December 22, 2012

Regular Yet?

Music, Madness, and Passion.

Two weeks ago I penned a post entitled “Are You Regular?” detailing the actions of some amazing men and women from around the Triangle Area of North Carolina (Raleigh, Durham and Chapel Hill).  Today marks 3 months since they put on The Regulars play for Miracle 2012, and I wanted to pay tribute to +Brian Cornwell, +Tim Noonan, +Paul Baldasare, +Dino de Costa Pratt, +Ryan Harris, +Alfie Potter and Sue and Burgess, and . . .  and all the other amazing musicians who pooled their talents together.   Let me not forget the amazing hospitality of The Big Easy and Kevin the General Manager.

To say it was an emotional event would not do it justice.  It had barely been 30 days since Evan had lost his fight.  An amazing artist who we had never met had painted a water color of Evan in happier times; the tears started early and didn’t really stop till we got home.  So many friends showed up at from so many different areas of our lives; they came from soccer, church, work and school; they even came from Cary, Raleigh and Chapel Hill, but also from Alaska and Tennessee.  And if you had wanted to come, but couldn’t find a way to make it happen, I came across some footage.  You can link to it here

The footage is grainy and from a cell phone, the sound is mono and tinny, and yet it still speaks clearly.  In the clip, Paul Baldasare sings the lyrics taken from Evan’s poem “Life is Like a Road” while Tim Noonan carries the song on his guitar.  Tim and Paul pulled it together over the course of a week in Tim’s basement studio just for this event. It was a premiere where the drummer and bassist had never rehearsed, and yet they were amazing. This song will likely never be played again but it has a very special place in our hearts.

I suppose since it’s Saturday, I should stop here, but I have just begun to get my feet on the soapbox; let be segue from people helping specifically to people demanding action. In the past 10 days we have been subjected to the horrors of Sandy Hook Elementary School where 20 children between the ages of 6 and 10 were gunned down in their classrooms along with 6 faculty and staff.  The nation has picked up this shocking event and run with it: Ban assault weapons, put a policeman in every school, “IF a child throws a rock at another child, we do not hand rocks to every child”, 26 acts of kindness.  The outpouring of demand for action has been fever pitched.

Lost in the cacophony of hot air and political posturing on an issue that has no opposition (No one favors shooting kids in school) is the reality that the parents face: Nothing can bring back their child; nothing can take the edge off the anger, fear and bewilderment.  And now let me grab this debate by the throat and throttle it.  By all known means of data, more than 1600 children lost their battle with cancer last year.  That means that every week of last year 50% more children died each week from cancer than died in one horrific afternoon in Connecticut. 

That fact should not minimize the tragedy in Connecticut, but perhaps highlight a better target of our demands for action.  And just like the parents of the children at Sandy Hook Elementary, both of surviving children and those who perished, every parent of a child dead from cancer cannot understand why their child? why this way? what good can come from this?

At times like these we should take a page from the playbook of The Regulars, they may not be doctors, n’lawyers, n’such; but their God given talent with music can be a source of joy, a center point of conversation and a useful tool for good in the most challenging of situations.  One such group that has been around long before any of these discussions were begun is Nevus Outreach, Inc. ( )  3 families united by children in trouble connected via a new media, the internet, set about educating all who they met and raising awareness about a childhood affliction they were all just coming to terms with: Nevus.

Nevi (plural for nevus) are commonly referred to as birthmarks.  But in some rare instances, a birthmark doesn’t stay small, but grows during gestation to be quite large.  In Evan’s case, his covered over 1/3 of his body, with little birthmarks or satellites covering much of the remaining skin.  In other cases, the melanocytes which form the nevus cover the brain and central nervous system.  So little was known only 20 years ago about nevi that only wives-tales pervaded about diagnosis and prognosis existed in the medical community.

One of the founding familes +Mark Beckwith, +Kathy Stewart, & +Megan Stewart remain intimately involved in the organization they helped found some 17 years ago or so.  Mark continues as the organizations Executive Director and they can count among their accomplishments: raised awareness; a database of patient specific information, treatments and outcomes; sponsored research; and international collaboration of both patient groups and medical providers and investigators.

Nevi are essentially benign, but there are clearly some triggers that cause malignancies, however the incidence is remarkably low given the predisposition of the nevi to already be an existing over-proliferation of cells.  That said investigators such as +Heather Etchevers explore fetal development cell migration, and +Dr. James Barkovitch looks at MRI evaluations, and Dr. Ash Marghoob at Memorial Sloan Kettering trail blazed for data base creation; all because of initiations or pushes or cash support by or from Nevus Outreach.  That is before tissue banks and the Worldwide Registry.

They saw a problem.  Their child was at risk; their three children with a little known condition with horrific prognosis that seemed to come from the village witch doctor rather than any scientific method.  Three children became thirty, became 300, became a force to be reckoned with.  The scientific breakthroughs in diagnostics, prognostics, data gathering, psychology and treatments have been breathtaking to behold; and yet there is still so much to be done.

And it is with that point I come full circle on this chilly Saturday morning.  Right now as I write, Tim  and Brian from The Regulars are listening to Christmas Music of a rock n roll variety, while Kathy, Mark and Megan are likely taking in a more choral version of a similar theme.  Heather is playing a duet with her daughter while her son listens on giving the critiques only a French teenager can make; and somewhere in Connecticut, someone is taking in the he music of the season and finding in those harmonies a measure of hope and the stimulus to get something done.

For something must be done.  Children should not die; whether by guns, drugs, or cancer.  But the two constant themes of loving success are music and collaboration.  So I ask you, who will you sing with tonight? and who is willing to listen to the issues that truly matter to you?  When you find either of these people be joyed, when you find both in the same person love them as a lifelong friend.

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