Dystonia Fundraiser and Education Class

“Mom, who are you talking to?” my son asked between coughs. I laid my phone on the bench and walked over to my little boy. He looked so small and helpless in his hospital bed with tubes coming out of his nose. I checked my watch. It was 1:30 in the morning. I marked the time on the piece of paper that was lying on the tray next to his bed. I had been up all night for this PH impedance probe test and I was exhausted. I had to document every time he cleared his throat, sneezed or coughed for his doctor, who hoped the data would shed some light on the impact his Dystonia was having on his esophagus. “Is it daddy? Can I say hi?” I kissed him on his forehead and hugged him. “No baby. It’s not daddy. Daddy is asleep at home with your brother.”   He wrapped his arms around me and asked, “Who are you talking to then?” As I hugged him back I tried to think a way to explain my relationship with a man I had met on the internet.

I had met him several months earlier when he messaged me on Facebook to say he had read my blog. He was a nursing educator and was surprised at how little he knew about the neurological disorder plaguing my family. He invited me to guest blog for his company’s web site to help raise awareness for Dystonia. I eagerly agreed. Over the next few months I would go on to write three separate articles for his company.

The very first time we conversed about my writing, I knew I liked him. He was by all accounts a good person. After serving ten years as an Army Medic, he re-entered civilian life as an ER nurse and later started his own nursing education company. He was smart and talented, but rather that choosing a high profile career, he had chosen a life of service. He reiterated more times than I could count that his number one priority was education and awareness and that the key to change can lie within a single person. I will never forget the day he first told me this. I laughed at him. I was struggling with helplessness as my kids’ healthcare providers were running out of ways to help them. His notion seemed so idealist. So simple. But he was determined to prove me wrong, adamant that education could lead to change.

“Yeah,” I countered, “Well who’s going to teach then? You care and even you do not have a Dystonia class.” My statement was met with resolve. “You are right,” he said. “I should have a class. And just to prove to you that I care, I will do a class for free, so that it is accessible to everyone.” I sat stunned. His offer was so kind. “If you are willing to work for free,” I said without even thinking, “then why don’t you do the class, but charge your regular fee and donate all the money to the Dystonia foundation?” The man who I had met on the internet never even hesitated, “Great idea. I’m in.”

I had no way to know just how much work writing a dystonia class would be. Truthfully I’m still shocked that he agreed to do it. But not only did he deliver on his promise, he enlisted the help of Pedagogy Education. The medical education company has graciously offered to host and run the class free of charge so that Dystonia education can be easily accessible online to all nurses across the US and Canada. Pedagogy asked for zero compensation and worked tirelessly to ensure every dollar generated from the class would go toward the Dystonia Medical Research Foundation (DMRF).

So after several months of working with the DMRF, Pedagogy Education and Central Valley Medical we finally have a course designed to help create a better understanding of a little known neurological movement disorder called Dystonia. Dystonia is a complex and varied condition that can present, manifest and be treated in many different ways.  This course will differentiate and define the key characteristics of Dystonia, discuss the prevalence and explain how the disorder impacts those affected. Understanding traditional treatment guidelines and medication therapies will help nursing staff better care for and assist patients suffering from Dystonia. But that night sitting in a hospital room with my little boy I didn’t know how to explain why I was talking to a nursing educator about a class in the middle of the night. I didn’t know how to tell my son that there was a person so dedicated to helping a child he had never met that he was working with me to write a course while he was on his break during his graveyard shift at a hospital thousands of miles away. I didn’t know how to explain that complete strangers had stepped up and volunteered to help spread awareness for a disorder that few had heard of. So instead I told him the simplest truth, “My friend. I’m talking to my friend.”


If you are a nurse and would like to help raise money for Dystonia awareness, go to the following link to sign up for the class: http://pedagogyeducation.com/Main-Campus/Class-Catalog/General/Class.aspx?Class=239 This 2.5 hour fully accredited class will count toward CE credits. All proceeds of the purchase of this course will be donated to the Dystonia Medical Research Foundation. You may learn more about the DMFR here: https://www.dystonia-foundation.org/ Special thanks to Central Valley Medical and Pedagogy Education for their hard work.


If you are not a nurse and would like to help, please share this post with the nurses you know.

5 thoughts on “Dystonia Fundraiser and Education Class

  1. Heather, What a wonderful article and great opportunity to educate. I believe that educating the medical profession is the key. Your blog has reached a remarkable person. Thank you for sharing your experiences and kudos to you and your “new friend.” Best to your son and family.


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