Front row, Center.
A man and his violin. And a magical bow to induce vibration and invite the heavenly sound filling this blessed space.
At times, he finesses notes willfully, like summoning a genie from a bottle. At other times he seems to be simply setting notes free, feather light in their ephemeral float.
Suddenly a single bow string breaks under the delicate strain of music making. When he finishes the piece he’s playing, Perlman casually peels each half of this dangling horsetail hair from his bow, and lets the two strands fall to the stage.
At intermission the elegant woman to our left engages Ivana & I, and wonders aloud if it seems okay to collect the fallen strands of bow string from the stage. Inspired thought begets determined action, and soon we are handing her one of the pieces, keeping the other for ourselves. The first half of Perlman’s performance, augmented by our successful little caper, has us elated. Introductions ensue.
Christina tells us she’s a “carver”. While there’s no hint of deliberate understatement in this, it is tantamount to Itzhak Perlman engaging strangers in a conversation and stating “I play violin.” But we don’t know this yet. For now she is the kindhearted lady with whom we are happily bound as co-custodians of a broken string from Itzhak Perlman’s bow.
As we settle into conversation through the intermission and then again after the performance, we tell Christina about #FightingForMaya, and how Maya herself has recently started a hopeful compassionate-use treatment protocol for Batten Disease. To receive the treatment, Maya must travel with her family every other week from her home in San Diego, CA to the Nationwide Children’s Hospital in Columbus, OH.
In the lobby of Nationwide Children’s Hospital, there’s a gorgeous etched-glass installation that honors benefactors whose individual and collective generosity has breathed hope and comfort and possibility into the lives of children like Maya. This donor wall is a sight to behold, all light, and butterflies, and grass and trees, gratitude and kindness.
This donor wall also just so happens to have been created by our brand new friend, Christina Amri.
In physics, string theory is an attempt at a theory of everything. Gravity and quanta. Quarks and quasars. Elementary particles viewed as vibrating strings, which, in concert, give rise to the music of the universe.
In a music hall, an individual bow string must work in concert with many others if it is to be of any use at all. If it is to engender something worth sharing.
Several weeks prior to this serendipitous October night in Portland, other strings had begun to vibrate. Maya and her family were in Columbus for their first of what would become many life-affirming cross-country trips. At the very same time, Ivana was visiting Columbus on business to attend a conference hosted by none other than…. Nationwide Insurance. She had planned to go to dinner with friends and colleagues from Nationwide, but had to decline because a different kind of celebratory dinner was available: Maya and her family had just learned earlier that day that she was accepted to be part of the compassionate use clinical trial!
In response to Ivana sharing with her counterparts at Nationwide the reason for her change in plans, they essentially asked “Who’s Maya?” and listened with rapt attention to Maya’s story. Within seconds, several of them took a deeply personal interest in doing anything and everything they could to help out all of the Batten families taking part in this trial, efforts that have only grown in scope and meaning in the months since then.
With each and every string, the music grows more resonant. The Batten Disease Support and Research Association (BDSRA) works tirelessly to assure a better quality of life for those living with the disease, while also pursuing treatments and cures. BDSRA has forged strong relationships with families like Maya’s, as well as with partners at Nationwide. Families dealing with Batten Disease, who may be traveling from far away to seek treatment, often need support with the big -- housing, flights, local transportation -- to the seemingly small, like replacement of the wood floors of an apartment with some carpet, so that a child with Batten has a softer place to fall. Everything matters.
Aquanauts Photography began this past Fall as an endeavor to share inspiration from the natural world while supporting organizations devoted to health, wellbeing, and conservation. Some of the most compelling photos are the ones that tell a story you can see your way into. They are about relationships. #FightingForMaya and the stories of other Batten families compel us to do something. And so we are.
Our dear friend Christina took no time at all to express her enthusiasm for doing something positive, and instantly suggested we use her studio space for our first BDSRA fundraiser. We are also deeply blessed to have a planning committee brimming with talent and beneficence.
On June 3, 2017, we hope you’ll consider joining us in Portland for “An Evening of Art & Science: Everything Matters”. Additional information about this special fundraising event is coming soon…. Let’s tie a few more strings, together!