Tag Archives: Sam Belzberg

My Father, My Hero

9043868_sWe all need role models who fuel our desire to make the world a better place. Mine is my dad, who’s passing this week has left a huge gap in my immediate family and also in my extended family: the Dystonia community.

Back in the 1970s, when my strange movements began, Dystonia posed a mystery scarcely understood by medical professionals. In the absence of specialized foundations, patients and their families had nowhere to turn. The movement disorder neurologist who diagnosed me could only offer utter lack of hope but that didn’t reside within my parents’ vocabulary and they determined to find a brighter tomorrow. If there was no way forward, it was time to construct a road.

With iron resolve and a heart full of love, my father scoured a barren landscape for information about my little-known disease. From his research at the local library, he located a rising neurologist – Dr. Stan Fahn – to help him forge the way, beginning with a much-needed medical conference opening a gateway to scientific discussion. My father’s fundraising gave birth to the first International Dystonia Symposium. It was a crucial step forward but the work had just begun.

Intent on his mission to secure me the very best care, my father helped build a thriving community that supports patients and their families while propelling forward medical advancements. The Dystonia Medical Research Foundation owes its strength to the steadfast determination of families like mine, the Belzbergs, the Kesslers and countless others.

Serving as the initial Treasurer, my dad worked tirelessly on behalf of the Dystonia Medical Research Foundation, earning a lifetime position on the Board. He never sought accolades, just a better life for me, in the process touching the lives of hundreds of thousands. He’s truly one of the unsung heroes of the Dystonia community and he’s my hero. My dystonia blog is a continuation of my dad’s vibrant spirit and can-do attitude. I’m eternally grateful for the life he made possible and the hopeful future he paved.

In loving memory of my father, Martin Sloate.


Donate to the Martin & Roberta Sloate Dystonia Research Fund here:  Dystonia Research Fund.


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