Stephanie Sorgie – TCS NYC Marathon

Since I can remember, running in the New York City Marathon has always been on my bucket list of things to do. I have known of the NYC marathon since I was 10 years old; it is the largest and most known marathon in the world. This year I hope to gain entrance into the 2019 marathon by raising $2,500 for the Dystonia Medical Research Foundation. On November the 3, 2019 I am going to run 26.2 miles for my son who cannot.

Why run for dystonia? My amazing son Johnny is 5 years old and has Athetoid Cerebral Palsy. Due to his brain injury, he suffers from dystonia for the majority of his waking hours, and a handful of what should be his sleeping hours. Cerebral palsy is the most common physical disability in children; about one in six cases of Cerebral Palsy involve dystonia. And the prevalence of Cerebral Palsy is 4 in 1,000 births. Dystonia does not only stem from cerebral palsy; it is also seen in Parkinson’s, Huntington’s, Wilson’s, certain infections, certain tumors, and other traumatic brain injuries.

What exactly is dystonia? Dystonia is a neurological disorder that causes excessive and involuntary muscle contractions. These muscle contractions result in abnormal muscle movements and body postures, making it difficult for individuals to control their movements. The movements and postures may be painful.

Because dystonia causes involuntary muscle contractions, it impedes motor function and relaxation. Due to Johnny’s dystonia, it is extremely hard for him to execute a purposeful movement. He has to put in so much energy to control these involuntary contractions. It robs Johnny the freedom to control, predict, and plan movement of his body. It takes away from him being able to explore, learn, communicate, and play as a child should.

Because of Johnny’s dystonia, he has to undergo botox injections every 3 months. For these injections, he has to go under general anesthesia because they are painful and the muscles are too small to trigger in such a small child. He has tried numerous medications and treatments such as tetrabenazine, valproic acid, acupuncture, Anat Baniel methods, and diazepam, to name a few. He has to have physical therapy 5 days a week, occupational therapy 4 days a week, and speech and eating therapy 5 days a week. This is just a partial list of his therapies. He needs to be stretched and massaged every day.

When I decided I wanted to run the NYC marathon, I glanced over the foundations to raise money for. Once I saw the Dystonia Medical Research Foundation, I knew this was not just coincidence; I was meant to do this. As mothers we want to fix the unnecessary and unfair challenges our children face; unfortunately at this point in time, I can’t fix this for Johnny but I can do something to help make it better. This is one of my ways of making it better, and I ask you to join me.

Your donation will have a direct impact on those who live with the challenges of dystonia every day. The Dystonia Medical Research Foundation will use these funds to furthering the fundamental understanding of what dystonia is. It will help to uncover the mechanisms in the nervous system that lead to symptoms and discover targets for new and improved therapy to treat dystonia. Please consider donating to this amazing cause and help me to fight like Johnny.

Donation Goal

$3,340 of $2,500 raised


Heather Hieronymi

Emanuel Cirenza

Eric Slaasted

Catherine Frazier

Michael Walberg

Pamela Higgins

Mike Gulli

Jason Staley

Daniel Hom

Kelly Gennoy

Ryan Czado

Megan Nadeau

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Donation Total: $25.00 One Time