Wow is my first word. Passion is my second. Purpose is my third. And the list continues with words like dedication, perseverance, grit, spirit. Thinking about my experience so far with Sole 2 Soul, I’m flooded with these words which translate into emotions, much like the lyrics to the songs I write to embody a feeling in a particular moment.

I grew up mesmerized by the sound of my dad’s 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 acoustic 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.

I had never heard of MPNs (or MPDs as they were called back in 2000) when my father, Harvey Gould, was diagnosed with myelofibrosis. My dad had just walked me down the aisle, my sisters were not yet married, my dad had no grandkids, he was only 55. We all spiraled and tried to understand what was happening and hold onto something. Little did we know that it would be my dad himself who would be the rock and foundation for all of us, guiding us through the ups and downs of his MPN journey with his endless positivity, love for life, sense of humor and will to live. Back to my first word: Wow.

Dad was given 5 years to live and then lived for 14. He lived to walk his other two daughters down the aisle, to meet his six grandchildren, to cherish his remaining time with the love of his life (my amazing stepmother, Karen) and to leave an incredible legacy of love, life and music. Dad was also passionate about helping others in the MPN community. He started to blog (“The Long and Winding Road”) about his experiences both with medical treatments and physical symptoms, as well as his emotional journey, and he shared openly and endlessly with other newly diagnosed patients, most of whom he never met in person. It was just his way.

Dad knew the MPN Research Foundation founder, Bob Rosen, and was involved in the early years of the Chicago-based MPN Research Foundation (MPNRF), having grown up in Highland Park, Illinois, a suburb of Chicago. I had the pleasure of meeting Bob when my dad was posthumously awarded with the prestigious MPN Heroes Award. I was thrilled when MPNRF included me in the award ceremony video! A year later, I was delighted to receive the foundation’s call inviting me to become a board member, an honor which I readily accepted.

A few months ago, when Barbara from the MPNRF called me to ask if I’d be interested in representing the foundation on the Sole 2 Soul trek, I thought, wow, what an amazing opportunity! I immediately blocked my calendar and set about completing the logistical preparations. It seemed so far in the future. And when the day came to board the flight to our practice hike in Colorado, I started to feel nervous. Who were these other people? Would I fit in? Did they want me here?

I arrived in Denver and was the last person to enter a van full of other Sole 2 Soul trekkers, and as I jumped into the van they said, “We’ve been waiting for you! Let the party begin!” And so it went. We all became fast friends, brought together by the trail and our love of nature and the sounds and smells and feelings the trail evokes. But more importantly, we were bonded by our common commitment to finding a cure for MPNs. Never before have I felt so connected to a group of people in a mere 36 hours (OK the foosball championship helped!!).

I am so looking forward to the Waterton hike and I cannot wait to see my new friends again, to welcome our new friends and partners, and to honor my dad and all of the other past and current patients with MPNs on their journeys, as we all join together to find a cure. I’m honored to be part of this amazing journey.

“One thing that is real, the love for you I feel, one thing that is constant, always true; One thing that’ll stay, forever and a day, is the love that I hold in my heart for you.” – Harvey to Jennifer and Lisa in “Little Babies Mine”, written for our B’not Mitzvah in 1984.

“Well, this time, don’t you know, it broke my heart to let you go, but you opened the door, showed me the way and before you left you looked at me to say: Give me a kiss, show me a smile, well – I’ll be seeing you in a little while, and if you need a taste of home close your eyes; close your eyes and you will see a little piece of me…always with you like, you’re always with me.” – Lisa in “Always With Me,” a song to her dad after he passed away, 2014.