Tag Archives: Bachmann-Strauss Foundation

Reflections Of A Dystonia Advocate: The Power Of Unity

18210466_sAs I embark upon my second trip to Capitol Hill as a Dystonia Advocate, I reflect upon what this journey means to me and from whence we came. Of course, it’s an honor to speak for Dystonia and interject our issues into the legislative process but there’s even more beneath the surface. Dystonia Advocacy Day is an awesome display of the power of unity, which goes to the heart of our community and is precisely what we need to fuel our hope for a cure. Though Dystonia often feels like an amalgamation of different conditions, we stand strongest together. We share an imperative of unity of spirit, purpose and action.

Not so long ago, as recently as the early 1970s, there were no foundations fighting for us let alone a group of advocates advancing our cause in D.C. The organized cause of Dystonia is a story of the tenacity and determination of parents – including mine – who insisted on combatting a mysterious medical disorder and harboring hope for a better life for their children…also of patients who dared to dream of a world without Dystonia.

The Dystonia Medical Research Foundation (DMRF) tells a tale of how adversity connects strangers and extends families. When they founded DMRF in 1976, Samuel and Frances Belzberg planted seeds of promise in a destitute garden, carrying on their backs the hope of their daughter, Cheri, and Dystonia patients across North America. Banishing “surrender” from their vocabulary, the Belzbergs determined to slay the beast and support others facing the same foe.

This Vancouver family wasn’t alone. My parents stood tall when research was scarce and every foot forward measured a mile, including their part in the 1st International Dystonia Symposium in NY. I like to think fate brought my father to the Belzbergs but this is best attributed to his resolve to move mountains…or at least cross a continent! In 1981, Dennis and Barbara Kessler made their way to DMRF after their son, Arthur, was diagnosed, donating their hearts and souls. Families such as these – holding little in common beyond a rare movement condition – are bound by unity of spirit and purpose, coming together to light the path towards a brighter future.

Once the snowball gets rolling, it achieves its own momentum. In the early 1990s, Bonnie Strauss, a proactive Dystonia patient in New York, whose mother and grandmother were afflicted with Parkinson’s, teamed with her father, Louis Bachmann, and translated her aspirations into an annual golf tournament that burgeoned into the Bachmann-Strauss Dystonia & Parkinson Foundation. Bonnie enlisted family and friends to join her battle and once again the power of unity spoke loudly. Conviction, dedication, fortitude, perseverance – these are sacred words.

I feel honored to enjoy special bonds with both foundations: my father, the DMRF’s first Treasurer, played a key role propelling DMRF and Bachmann-Strauss is my “home away from home” in New York City. However, most vigorous is my connection with the Dystonia community, encompassing patients, families, caregivers, clinicians, and devoted organizations reflecting the diversity of Dystonia. Led and staffed by remarkable individuals, these organizations raise their voices and help man the front lines in a war that holds promise but has yet to be won. In a world riddled with selfishness, neglect, violence, even insane acts of terror, we all need friends and I’m grateful to everyone who works tirelessly to advance our hope.

I can’t help but marvel at the spirit of cooperation showcased during Advocacy Day, when individuals from throughout the country representing the full spectrum of Dystonia gather as one big family in pursuit of our common objectives. Join the fight – advocate, spread the word, share your story, volunteer, blog, fundraise – the particular action is less important than making that critical step to become involved. We need rise proud as a community, making a difference with a resounding symphony of concerted action. It’s my privilege to participate in the unity of Dystonia and our combined human potential to shape opinions and events. Take that leap of faith, never say “never” and never give up!

Check Out Some Community Friends:
Dystonia Medical Research Foundation

Gohei Nishikawa…Soul Friend

I recently enjoyed the pleasure of a private recital by Gohei Nishikawa hosted by the Bachmann-Strauss Dystonia & Parkinson Foundation. I didn’t know what to expect from a pianist who shares my condition. Certainly not a transcendent performance by a charming man with a boyish grin and endearing humor whose words waxed as eloquently as his notes.

A latecomer to piano at age 15, Gohei dove into an arduous relationship demanding personal sacrifice to fast track a burgeoning career. He embarked on a journey that brought him from Japan to New York City and landed him debuts at Lincoln Center and Carnegie Hall, only to encounter a mysterious disorder when he had just begun to fulfill his promise. Hands trained to intricately caress the keyboard suddenly froze when he sat down to play.

Gohei battles what is termed Musician’s Dystonia, an impertinent guest that acts out with a curl of the fingers when he exercises his craft and tends to behave when his hands aren’t engaged. Though his dream was brutally sidetracked, Gohei fought back to reclaim his miracle, presently an even harder-working right hand collaborating with two fingers on the left. Gohei determined to celebrate his passion through performance and teaching, devoting himself to refining the next generation of talent.

His artistry is light years away from a disorder that incapacitates and restricts. Gohei undulates his wings and carries his audience to another realm. His fingers brush whispers of encouragement, strains of hopefulness and declarations of strength. While his technical rigor is remarkable, what truly elevates his music is an emotional splendor that fits an entire universe into the magical vibrations emanating from the keyboard.

One of the cruelties of Dystonia and so many other disorders is their strike at the heart of life’s passions: the dancer losing the grace of her limbs, the athlete facing permanent dysfunction, the mother unable to lift her child, the musician whose hands turn rebellious. Triumph lies in adapting our dreams to fit our realities and stretching our realities to accommodate new dreams.

Gohei and Pam at Gracie Mansion.

I’m blessed with a succession of stories by people who navigate a life of physical struggle from a place of hope. Listening to Gohei’s awe-inspiring gift, I envisioned his journey and saw mine more clearly. His exultant return to piano is a taste of the celebration of optimism I’ve encountered. My new friends have touched my soul with their generous spirit and heartfelt candor.

Gohei is accepting students in Manhattan and Greenwich, CT. He can be contacted on Facebook: https://www.facebook.com/gohei.nishikawa