I grew up mesmerized by the sound of my dad’s voice and his acoustic guitar as we roasted marshmallows around the fireplace – “Puff the Magic Dragon,” “Jet Plane,” “Rocky Mountain High,” “You’ve Got a Friend,” I fell in love with the lull of the guitar and the raw truth of folk music. Inspired by my dad, I started playing the guitar myself when I was 13 and have been writing my own music ever since – a special bond I always shared with him.

When I eulogized my dad in 2014, after we lost him to his 14-year battle with myelofibrosis, I started:, “There must have been music playing when my dad was brought into this world.” It was always about the music.

Music has the power to bring and bond people together in mysterious ways. The songs I write embody an emotion, a feeling, a state of mind. Music evokes memories. When my oldest daughter was in preschool, I wrote a simple class song to the tune of “Twinkle, Twinkle, Little Star,” and went into her classroom one morning with my guitar. I taught the kids “their” song and their faces lit up with smiles as they realized this song was about them! Pure joy. This experience led to a tradition of writing a class song for each of my two daughters at the end of every school year. I let each of them pick the melody (Justin Bieber, Justin Timberlake, Queen, One Direction, Taylor Swift, Pink, to name a few), and I write about everything they have learned that year and their experiences. It has become a cherished tradition for our family and for their classmates.

As I hiked along the trails in Colorado on our practice hike, overwhelmed with the sense of community we were building, and by the lofty goal we had set – to find a cure for MPNs – it suddenly was clear to me that I must write a song to memorialize this journey. I wasn’t sure if my new Sole 2 Soul for MPN™ friends would be as excited about the idea as I was, but I decided to follow my passion.

On our last night in Waterton, with song sheets printed and in hand, we all gathered out on the patio of the hotel, with Paul’s Bluetooth speaker blaring a karaoke version of Billy Joel’s “Piano Man,” and we all sang the song I had written to that tune, “Cheers to the Waterton Crew.” For me, it was a very special moment. I saw smiles, I saw tears, everyone was swaying to the music, and I could see and feel the connection they were making with “their” song. I was able to bring my love of music and writing to this special group of people and as one of the team members said to me afterwards, “Your song brought a group of people who were already bonded, even closer together.” That’s the power of music.

Cheers to the Waterton Crew or This Long & Winding MPN Road

(to the tune “Piano Man” by Billy Joel)

Verse 1

On a Friday evening in Estes Park

A brand-new crew shuffled in.

There were nervous “hellos” filled with energy

And so, let the journey begin.

As we went ‘round the room breaking barriers,

We each had a story we told.

But, there’s a chapter we share, and it hung in the air

And it’s big, and it’s brave, and it’s bold

This long & winding road, this long & winding MPN road….

CHORUS

We are Sole 2 Soul fighting MPNs.

We’re bonded by our common view.

That as we hit the trail, we will find a cure.

So, cheers to the Waterton crew.

Verse 2

We take the first steps at the trail head

And the mountain air sets us all free.

Through some tears & with a smile, we will conquer the miles

And there’s nowhere that we’d rather be.

Some of us live with an MPN.

We are daughters, friends, husbands and wives.

We are doctors who care, we are researchers

And we’re here to save thousands of lives.

This long & winding road, this long & winding MPN road….