PIONEER: [pahy-uh-neer]: 

a person who is among those who first enter or settle a region, thus opening it for occupation,  one of a group of foot soldiers detailed to make roads, dig entrenchments, etc., in advance of the main body.

The exhilarating journey of hope and advocacy with Two Hearts Rock continues to take me to beautiful places, not only in my heart, but on the map as well.  I wonder if Columbus felt this way when he set out to discover the New World?  History teaches us that pioneers existed in many facets of life. Christopher Columbus was a pioneer of new land. Jane Addams was a pioneer of Social Reform.  Albert Einstein was a pioneer of Science.  Martin Luther King, Jr. was a pioneer of Human Rights. Jackie Robinson was a pioneer of Sports. Ben Franklin was the pioneer of Electricity.

Likely, you are well aware that pioneers are categorized as “achievers”.  They can be defined as: “men and women who have the courage to test existing boundaries, who aspire for something more out of life than what currently exists. Pioneers are men and women who are willing to chart the unknown at a cost to their own comfort and security.”

In my recent travels to Southern California, I had the distinct privilege to be among many kindred spirits, at the First Annual Tribute to Champions of Hope, hosted by RARE Project | Global Genes. Listening to the inspiring words of so many, it occurred to me that pioneers are not from long ago. Pioneers are among us here and now!  I was in fact in the presence of 500 modern day pioneers!

For example, Mr. Bill Barkeley, Deaf-Blind Adventurer and Storyteller, embodies extraordinary perseverance. He tells of his personal struggle with Usher’s Syndrome, a rare disease that robs people of their hearing and vision over time. Despite the obvious challenges, this modern day pioneer reached the summit of Mt. Kilimanjaro in Africa as a project on assistive technology for the deaf and blind.

The creativity, conviction and curiosity of Mr. Charles Dunlop, Founder of Ambry Genetics led him to the discovery of an innovative process for sequencing a gene responsible for Cystic Fibrosis. In addition, as Founder of Mauli Ola Foundation,  he supports Cystic Fibrosis patients in a most creative way.  It is proven that saline saturated air promotes healthier lung function in CF patients.  This modern day pioneer’s founding of the Mauli Ola Foundation unites surfers with CF patients from the North Shore of Hawaii to the coast of Massachusetts.   Through Mauli Ola Foundaton, which means “Breath of Life”, Cystic Fibrosis patients are receiving therapy from the “healing waves” of the ocean, thanks to this compassionate and innovative pioneer of our time.

The brave and passionate character of the parents with children suffering from rare disease cannot go without mention.   David and Sara Kennicott, parents of Bridget who suffers from Batten Disease, Tracy and Jen Van Houtan, parents of Noah and Laine who suffer from Batten Disease, Chris and Hugh Hempel, parents of Addi and Cassi who battle Nieman Pick Type C: you are examples of  pioneers. You inspire. You lead. You persevere. You are not alone on your journey.

Coming from a sleepy northwestern suburb of Chicago, I ask myself, “How have I landed among these magnificently focused, convicted, persevering, creative, curious, compassionate, resilient, risk-taking, independent people who possess a sense of higher purpose?”

I am uncertain if the pioneers that came before me ever received signs or directions that their journey was taking the “right” course.  It is likely that Albert Einstein’s bravery and resiliency overpowered his need to look for affirmations from beyond.  My journey to California didn’t really need confirming either, but I received the loveliest of signs while bravely exploring this new territory that has taken me into some uncharted waters.  As I overlooked the breathtaking expanse of the Pacific, I couldn’t help but notice this little cottage in the seaside cliffs of Corona del Mar. I knew I had reached some sort of destination in this continuing journey of Two Hearts Rock.

                                  Love and discovery are everywhere when your heart is open!

 On this Columbus Day, 2012, I give honor, love and respect to past, present and future pioneers.

By: Lori Butler

If you’ve been reading this blog, you’ll recall that an earlier post underscored the power of the Number 2.  It described how TWO-gether, Kerry and I paired our passions, and became a unified voice for Rare Disease Research.

On a personal note, I confess that I’ve never been very good at math. Back in high school I struggled horrifically.  In fact, I was such a source of frustration for my algebra teacher, I believe I contributed to his significant hair loss.

ALL is not lost, however, I do know ONE universal mathematical truth: LOVE MULTIPLIES!

2 x 2 = 4

FOUR – a nice even number. It even rhymes with “shore” (Yes, I’m a beach bum at heart).

Because I prefer English to Math, I’m now switching the topic, and changing the tune.

I like words. Well, that’s a significant understatement. I’m madly in LOVE with them.  They are music to my soul.

In colloquial English, used as adjectives, FOUR letter words can serve to emphasize or augment a sentiment.  In the proper company, this can be quite powerful.  Can I get a DAMN AMEN?

It’s also true that some four letter words are equally potent as other parts of speech.  Please have a listen to John Mayer’s song, Love Is A Verb.

Indeed, “LOVE” is one of my favorite words, depicted below with some of my other favorite four letter words.

These words inspire me, and keep my heart beating passionately for a critical medical Cause.  Perhaps some of them resonate for you, too.

It is my sincere hope that you will plug into the exponential energy of Two Hearts Rock, as we ROCK the HELL out of RARE Disease!

During the first half of 2012 Two Hearts Rock has been committed to working backstage. We have been dedicating our energy to learning more about the impact that Rare Disease has upon our world, planting the seeds for the future of our musical and medical mission and creating our very own website to which we can direct our fellow music fans and followers of Rare Disease Research: www.2heartsrock.org

Our uncharted route has been sprinkled with green lights at every juncture.  As Two Hearts Rock continues along this serendipitous journey, we keep Bridget Kennicott close at heart. Bridget and her valiant battle with Batten Disease remain at the very root of what we do here at Two Hearts Rock: capturing the power of music to create unity for this lesser known cause which impacts 350 million people worldwide. Bridget’s beautiful spirit, bravery and connection to music inspire us to beat this drum, strum this guitar and share this song with the world!

This fall we invite you to unify with Two Hearts Rock as we plug in, charge up and prepare a robust setlist for all the world to hear. Many have witnessed the unity that music creates. Wherever there is unity, there is HOPE.

Welcome to “Notes of Harmony & Hope”, the official blog of “Two Hearts Rock”, a nonprofit organization which unites music and medicine in order to positively impact the Rare Disease Community.

“Two Hearts Rock” is a labor of love fueled by the passion of Co-Founders, Lori Butler and Kerry Hughes.  As individuals, but with a unified voice, we share some thoughts as we invite you to advocate and participate with us in our journey to make a difference.

In the words of Lori Butler:

“Everything happens for a reason.” I am not so sure I fully subscribe to that theory; however, some things do happen for a CAUSE.

When Kerry and I discovered we shared a passion for rock and roll, we didn’t know it would lead us through tunnels of love, and fuel our desire to make a difference in the Rare Disease Community.

We have diverse backgrounds; Kerry’s expertise as a teacher and reading specialist, paired with my skills in medical marketing and public relations, make us a dynamic duo.  The unique blend of our combined experience, energizes our shared vision.

So, with the power of two hearts, we begin to live our dream and sing our song. By using music to unite people, inspire advocacy, fund research and support the children and families suffering from Rare Disease, we are confident that, in the words of Bruce Springsteen, “two hearts can get the job done.”

In the words of Kerry Hughes:

Green tea can lower the risk for heart attack and stroke, but green tea with lemon helps the body absorb 13 times more nutrients than green tea alone. Exercise boosts cognitive performance by stimulating the central nervous system, but exercise coupled with music has the power to organize your thoughts. A base pair is two chemical bases bonded to one another forming a “rung of the DNA ladder.” The best strategy in the game of Checkers is to move pieces in pairs.  Moving pieces in pairs is not 100% guaranteed, but when you do,  you provide a safe passage to the destination.

You see, all of these elements are great singularly, but together they are exponentially better.

Two years ago, two “random chicks”, a teacher and a medical marketing professional started out on a journey as kindred spirits with a passion for rock and roll (another dynamic duo), and each a heart brimming with compassion.  Independently, we are a passionate educator and a creative entrepreneur; together we are determined, passionate and creative souls that will have a greater impact on the Rare Disease Community as we synergize our hopes and dreams.

In November of 2010, a celebration of life was in order for a young friend, Bridget Kennicott on her 6^th birthday, as she valiantly battles rare, genetic and orphaned Batten Disease. Day by day this horrific disease is claiming Bridget’s life, robbing her of childhood. Recognizing that her days are precious and numbered, our hearts felt compelled to gather people in Bridget’s honor and share the healing power of music. This celebration marked the beginning of a serendipitous journey of advocacy for Bridget and the 350 million people worldwide who are impacted by 7,000 rare diseases: a humbling statistic.

As lemon boosts the power of green tea and music increases the benefits of exercise, we know that by harmonizing our individual talents we will cause the greatest change.  So with these rock and roll hearts, we embark upon a mission to change the face of Rare Disease, believing fully that, “Two Hearts are better than one and two hearts can get the job done.”

Two is everywhere.  Two is powerful.  Two is exponential. Two ROCKS!

Unlike other journeys upon which I have embarked, this one begins with an uncertain destination.  This journey requires no boarding pass, no luggage, no map, no GPS. Typically journeys like this are not appealing to me, because I have always been somewhat of a planner. Something urged me to get on this train with a map that exists only in my heart.  Equipped with this tool alone, I am comforted and reassured because I am learning that in fact, this journey is not about the destination, but the journey itself.

We began our careers together, shared spring breaks, celebrated engagements, weddings, first homes, new puppies and the births of our children.  Four years ago, while bravely enduring her own personal battle with breast cancer, my dear friend of 18 years, learned that she must become a warrior for her daughter, Bridget.

At the promising age of 4, Bridget was diagnosed with Late Infantile Lipofuscinosis Neuronal Ceroid (LINCL), more commonly known as Batten Disease.   Presently, Batten Disease has no cure and is always fatal.  Beautiful Bridget, who once brimmed with energy and curiosity, is assigned a numbered amount of days.  Batten Disease is swiftly taking over her childhood, as she is nourished through a feeding tube and physically restricted by her body at such a brilliant young age.

My mother told me a story once, about her four year old neighbor asking her this: “And where is your journey taking you?”  Imagine, if you will, a four year old asking of a 60 year old such a provocative question.   You see, whether four or sixty, every one of us is on a journey.  Oftentimes our journeys collide.

I find myself asking, time and time again, “Where is my journey taking me?”  What can I do when I want to help a friend in a situation over which I am powerless?  I can’t save a life. I can’t heal the pain. I can’t control time.  I can’t take her place.  With all of my heart, I believe in being a loyal and trustworthy friend.  At times, I don’t know how to be a friend to my friend.  Other times, I feel paralyzed and lost, until the sage wisdom of my mother floods the soul, “Continue being a friend. Just be there, like always.”

This friend remains a part of my journey too.  She continues to be there for me, just like always: an inspiration and a beacon of hope.

Today, February 29th, 2012 is International Rare Disease Day.   I encourage you to open your heart and your hand and join this journey with R.A.R.E. Project and Two Hearts Rock. In the words of Vera Nazarian, “Sometimes reaching out and taking someone’s hand is the beginning of the journey.  At other times, it is allowing another to take yours.”

Two hearts are always better than one…