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.

-Pam-

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

37 responses to “My Father, My Hero

  1. I am genuinely thankful for your father’s efforts and I’m very sorry that he passed. His spirit lives on in your strong will and motivation that brings a voice to many a dystonia stricken folk like myself. Your efforts are deeply appreciated. Hugs to you Pam, May Christ give you peace and comfort.

  2. Great story Pam! I’m sure that you were his Hero Pam!

  3. What a wonderful tribute to a wonderful man.

  4. The passing of your Dad leaves a void in all of our lives. A very grateful thank you from a member of the dystonia community.

    Ed

    • Ed, Thank you for your sentiments. My dad was a special man who loved his family and dedicated himself to eliminating Dystonia. I wish you had the chance to meet him, I know the two of you would have been fast friends. I will miss him dearly and can only hope to carry on his spirit. Sending my warmest wishes to your whole family. xxx -Pam-

  5. Pamela,

    is this right what I have read that your father has passed away?

    Your Homage to your father is impressive and you can be rightly proudly on him.
    If he has brought the Dystoniiebewegung so well forwards, one can pay barely properly.
    I say only respect and I bow to your father.
    With Your Blog you lead the work of your father away just as a patient’s presenter.

    Completely, completely lots of love from Germany

    Franz

    • Franz, Thank you for your lovely comment. My father was a special man who did so much for Dystonia. I will be eternally grateful for his tireless efforts. Best to you and your family this Holiday Season. xxx -Pam-

  6. A beautiful tribute to your Dad, who wholeheartedly and lovingly dedicated himself to eradicating Dystonia.

    • Stephie, As you well know, my dad was a peach! I love(d) him dearly and couldn’t be more proud to be his daughter. I’m forever thankful for his tireless efforts, a gift to so many people struggling with Dystonia. Hugs to your whole family. -Pam-

  7. Pam, I’m so sorry to hear that your dad has passed. Thank you for sharing this lovely tribute to the work he did for the movement disorder community. I look forward to sharing this with my dad, who remembers you well and fights his own battle with Parkinsons. Stay strong and please – keep carrying on.

    • Julie, Thank you for your lovely note. I’m noticed that you’ve been keeping up with my blog and that means so much to me. I’m sorry to hear that your father is struggling with Parkinson’s, I remember him fondly. My very best to both of you. Wishing you peace and joy this Holiday Season. -Pam-

  8. So sorry for your loss, Pam. Your dad was obviously a very special man, whose efforts benefit so many of us. It seems his generous spirit lives on in you. Wishing you and your family peace and comfort in the days ahead.

  9. So sorry to hear of your father’s passing, your loss of and that of the greater world. As a dystonia father of 2 I get a little bit of what must have driven him in the early years and if I had known him I would have had the utmost respect and reverence toward him.

    • Bob, Thank you for your sentiments. I’m sure you well know what drove my father’s efforts. He was an amazing dad and a gift to the dystonia community. Sending my warmest wishes to your whole family this Holiday Season. -Pam-

  10. I feel sorry for your father’s death. I did not know he was an activist of dystonia. I think the Dystonia Community is in mourning with his death. What a great article! What a beautiful story! It’s good to have you as family and as a blogger in this struggle.

    • Divanicio, Thank you for you thoughtful comment, my friend. Think of my dad as a silent partner in the fight against Dystonia! He offered such a tremendous spirit I can only hope to carry on. I remember when I started Dystonia BloggerMania on Facebook, it was you, myself and my dad! Sending you my warmest wishes. -Pam-

  11. It sounds like your father was a pretty cool guy. Sorry to hear of your loss.

  12. I am so sorry my friend to hear about the loss.I know the feeling …
    The gap will be bigger during this festive season,but life goes on and we have to compromise even with the idea of death.
    Have a peaceful festive season and live to remember him.
    All the very best, Doda🙂

    • Doda, Thank you for your expression of sympathy. My dad was an amazing person and it’s my honor to share his story. Sending you warm wishes this Holiday Season. -Pam-

      • Thank you dear Pam for appreciating my comment and my true sympathy.Your post was a touching tribute to the memory of such an amazing dad.Live to rember all the special moments you spent with him.
        My warmest wishes to you and yours ,Doda🙂

        • Doda, Your comments are more than appreciated and I also thank you for your continued interest in my blog, I cherish every “Like.” May peace rest within you this Holiday Season. -Pam-

  13. Pamela, what an awesome tribute to your father. I am so very sorry for your loss.

  14. Sorry for your loss, he sounds like a great person. I want thank you and your farther for all the hard work. Happy holidays.

    • Don, Your expression of sympathy means the world to me. You’ve been a loyal follower of my blog and I always look forward to your comments. My dad was indeed a special man who did so much for the dystonia community. Wishing you peace this Holiday Season and in the New Year. xxx -Pam-

  15. Hi Pam,

    We’re away on vacation and saw your post on your Dad.

    I’m so sorry for your loss, he was an amazing man and I know how close the 2 of you were.

    Thinking of you during this very difficult time.

    Regards, Myles

    Sent from my iPhone

    >

    • Myles, Thank you so much for your note. My dad was a special man who certainly made an impression on everyone he met. I will forever treasure the special times I shared with him. My very best to you and your family. -Pam-

  16. What an amazing story. I totally empathise with you over the love for your Father & rightly so, especially in your circumstances & with his passing. I hope he did not suffer pain. I think you deserve the highest praise for how you are keeping his spirit alive, as well as our Dystonia community & I am sure your Father was & will still be very proud of you. At present, my sister & I are struggling to look after our own Father, whilst waiting for a diagnosis of either Alzheimer’s or Medium Dementia. Having Dystonia myself, with all my complications, plus my 65 year old sister already being full time carer for her 43 year old son/my nephew who has Schizophrenia, this is becoming more difficult as each day goes by. On top of this, we are also trying to fend off two women who have been abusing his vulnerability & money, involving themselves in his personal & business affairs, which are draining us even more. We take it in turns to look after him, staying at a house with no central heating, but he is our Dad & has done so much for us in the past, so we need to do this. Unfortunately my Dad never understood my conditions, until a few weeks ago, then he became really upset, offering to pay for me to get help, which was so sad to see his anguish at being unable to help me. It’s a problem we must all go through, where relatives or anyone close to us can not bear the pain we are in & your Father did you proud too, which is an amazing memory to hold forever within your heart xx

    • Tracey, Thank you for your lovely comment. I am so sorry to hear about your father’s illness and wish him and your entire family the very best. I well know it’s not an easy situation but we do what we can. Your father is lucky to have such caring daughters and I’m sure you mean the world to him. Sending you big hugs. -Pamela-

  17. I have just gone to the blog. I am sorry for your loss in December. I feel gratitude for the advocacy work of your Dad in the fleld of dystonia, at a time when so little was known or understood. Am glad you had his support. You are carrying on his legacy – thank you.

    • Siobhan, Thank you so much for your thoughtful comment. My dad did so much for the Dystonia community and I’m proud to continue his legacy. Wishing you the best. -Pamela-

  18. Pingback: Daughter with Dystonia Honors Heroic Father

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