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!

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28 responses to “Reflections Of A Dystonia Advocate: The Power Of Unity

  1. Richard Schilling

    Good luck Pam!

    • Hey Richard, Wonderful to see you here, my friend! Dystonia Advocacy Day is an amazing experience and I feel lucky to be able to participate. We all need to make our voices heard where it counts. -Pam-

  2. Paula schneider

    Great post Pam! It will be a great day.

    • Thank you Paula. This post certainly hits close to home and was a true pleasure to write. It’s amazing to consider how far we’ve come in 40 years and all the individuals and families who’ve contributed to our cause. I look forward to seeing you in D.C. -Pam-

  3. Valerie Groovenhoff

    Thanks Pamela
    for being our voice and for spreading the awareness of all Dystonia’s. your efforts are much appreciated.

    • Valerie, Thank you for contributing to this site with your comments. I’m so glad we’ve had the chance to get acquainted on Facebook and through the support group and I look forward to our continued friendship. We are all in this effort together. Take care. -Pamela-

  4. Very powerfully written article Pamela, I really enjoy reading your Muses. Now that you have spoken a little about your parents I can see where you get your writing ability and never give up attitude from.

    • Murray, Thank you so much. This was a particularly poignant piece for me, taking me back through my 40 years of Dystonia to the mountains my parents faced when I was first diagnosed. Indeed, it took many a phone call with my father (my official “fact checker”) to write this article! I certainly get my attitude from my parents. As for my writing ability, my father has written me many a lilting rhyme but he isn’t much of a speller (lol)! -Pamela-

  5. You go Pam !
    You’re an inspiration to all in this strong community. Folks who are tired of the let’s try this pill or that treatment. And the social phobia, is always there. Many days, I prefer staying at home. I read your column & I get myself up and out. Pepe

    • Pepe, Always a pleasure to greet you here. I’m thrilled my articles help motivate you to get yourself out of that house; it’s always important to seize life by the horns. I guess I’ll have to keep writing! Keep up the good work. -Pam-

  6. Never say never and never give up !! I couldn’t agree more and bravo for you, advocacy is such a huge help for those who need it, I’ve called on my pd advocate numberous times.

    • Benjamin, Lovely to see you commenting. My activism and advocacy work mean everything to me. This was my big week: volunteering at the Parkinson’s Unity Walk last Saturday and Dystonia Advocacy Day this Wednesday – I think I’ve got movement disorder covered! You found one of my favorite lines in this post, written straight from my heart. Take care. -Pamela-

  7. thank you so much for sharing your skills and time in speaking up for us. Even though I’m in Australia the ripples flow through eventually.

    • Margo, It’s my complete honor to speak for those affected with Dystonia, giving voice to our particular issues and concerns. Whatever the country, the effort alone in coming together as a community is important. The ripples of unity flow steady and strong! As long as we keep fighting, there’s always hope! -Pamela-

  8. Right you are! The burden is always lighter when its shared. I am proud to say that we (in the PD community) advocate for federal funding of ALL research and we that live in Florida, support Tyler’s Hope at the University of Florida.

    • Hello Michael, I’m thrilled to report that Dystonia Advocates also request federal funding of all research – it just goes to show you that great movement disorder activists think alike! I’ve spent the month of April – Parkinson’s Awareness Month – supporting the Parkinson’s community and will continue my activism for all movement disorders. We really are one big family and stand strongest when we speak together. Tyler’s Hope is a wonderful organization and they certainly bring hope to many. -Pamela-

  9. GO PAM! I love your spirit and your ability to spread awareness through the written word. You are my hero!:)

    Much love,
    M

    • Marissa Dear, It’s easy to find my spirit with friends like you to inspire me. You’ve done so much to spread awareness yourself, addressing a host of medical conditions. I can only marvel at your generous heart. My activism has brought so many amazing people into my life who have forever changed me. I’ve come to see that my cause goes beyond Dystonia, even beyond movement disorder. You are part of the unity I write about and you make this unity stronger. I love you soul sister! -Pam-

  10. Thank You Pam! (Heartfelt!)

    • Kari, My pleasure. Just got back from Washington D.C. and I must say it was an incredible experience to speak up for the Dystonia community. Saw good friends and made new ones. Despite having Dystonia, there’s much for us to celebrate. -Pam-

  11. Donald Logan

    I just want say thanks very much for your time and energy. Your a strong go getting type of person. Thanks again.

    • Hi Donald, Always nice to hear from you. I try my best, which is all any of us can do! There’s much to be said for undertaking a positive point of view and I truly believe we must stand together as a community. -Pamela-

  12. JUDITH KLAUSNER

    What a beautiful tribute to your parents. Your father shared all of this with Abe and me. I, not having seen much of you, am so amazed at your words and deeds. Thank you for your work. My frst husband died ot Parkinson’s Abe, my second husband died of Parkinsons. I now live with a male friend I’ve known since I was a child. He is well into the last stages of Parkinsons. At my age I can only pray that what you do will be to find that cure. I THINK YOU WILL. Love, Judy Klausner

    • Judy, Thank you for such a lovely comment. It means the world to me to share my parents’ efforts on my site. I’m so appreciative of all they’ve done for Dystonia and it’s my pleasure to be able to give back personally. I never knew both your husbands had Parkinson’s – I hope you read the article by my former college professor included in my Parkinson’s post. It’s such an evocative description of life with Parkinson’s. I volunteered at the Parkinson’s Unity Walk in Central Park last Saturday and it was an amazing event, with people flying in from around the country to participate. You would have been quite moved, I certainly was. I feel a real attachment to this cause and those with Parkinson’s and truly believe that movement disorder is one big family. Sending you hugs. -Pam-

  13. Thanks for being an advocate and voice for us. By the way does Diane Rehm ever come down to those things? I know she has spasmodic dysphonia, as does one of the senators (I forgot her name0 and they’d be a big help in being a voice for dystonia and getting the name out there.

    • Jacqui, This was only my 2nd year at Advocacy Day and I didn’t see Diane Rehm though perhaps she’s attended in prior years. What an amazing story she presents, hosting her own talk radio show notwithstanding Spasmodic Dysphonia! There are a number of voices for Dystonia including all the wonderful bloggers listed in my sidebar. Too bad everyone can’t make it to Advocacy Day, but those who are there speak with one voice for all! Take care. -Pamela-.

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