The Reason for Traversing Tassie: Running to Shine a Light on Stiff Person Syndrome

Stiff Person Syndrome (SPS) is a strange name, we know. But it’s also a rare, debilitating neurological disease with autoimmune features. It is often mistaken for MS or Parkinson’s and, on average, takes a staggering seven years to diagnose. Patients are often disabled, wheelchair bound or bed-ridden. There aren’t good treatment options. There is no cure.

Shane James is a runner in Tasmania, Australia who suffers from SPS. His remarkable ability to push through his disability was chronicled in the 2014 documentary Run To Live. But he hit a low point afterward, having given up hope that SPS would ever achieve worldwide attention. Until Tara.

A successful dentist, blackbelt in karate, and mom of two kids, SPS derailed the life of Dr. Tara Zier. But she held true to her karate studio motto: Never Give Up. In 2019, Tara founded The Stiff Person Syndrome Research Foundation (The SPSRF) in Maryland (USA). 

The moment Shane met Tara on Facebook, he was inspired to embark on the race of his life: Traversing Tassie. On December 14, 2020, Shane started his run across Tasmania and back, from lighthouse to lighthouse, shining a light on SPS. He is committing all funds raised to The SPSRF to raise awareness and find a cure.

Shane James - Running the Point to Pinnacle Race in 2017
Shane James finishes Traversing Tassie, running over 500 miles to raise awareness and funds for The Stiff Person Syndrome Research Foundation

January 2021 – On the opposite side of the world, 52-year-old ultra runner Shane James completed a 24-day trek Friday to benefit a foundation in the DC region, hoping to find a cure for a rare disease he shares with Dr. Tara Zier of Bethesda.

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          January 2021 – Southern Cross TV covers the penultimate day of Traversing Tassie, ultra-runner Shane James’ epic 880km run to raise awareness and funds for The Stiff Person Syndrome Research Foundation.

          Shane James completing the first leg of his Traversing Tassie (TTX2) fundraiser for The SPSRF - story in The Examiner

          December 2020 – The Examiner covers Shane James’ milestone of completing the first leg of Traversing Tassie – running from Burnie to Eddystone Point – in eight days.

          RUNNING FOR RESEARCH: A new Stiff Person Syndrome research foundation has motivated Shane James to take on a new challenge. Picture: Brodie Weeding

          October 2020 – The Advocate of Australia wrote the first story about Shane James’ historic race, Traversing Tassie, and his plan to donate all proceeds to The SPSRF.

          The Route for Traversing Tassie: Running to Shine a Light on Stiff Person Syndrome

          547 miles/880 kilometers

          Somerset, east to Eddystone Point, west to Lighthouse Beach, finishing at Somerset. Stay tuned to this page to see the pins turn green as Shane passes each point.

          **Click and hold the map below to move it around, use two fingers to zoom in and out, and click on the blue pins on the map for Shane’s note on that spot.

          Click here for Shane's notes on the route.

          Starting at Somerset I’ll head east crossing the Cam River, passing through the scenic towns of Ocean Vista and Cooee, towards the city of Burnie. I’ll pass the lighthouse at Round Hill called Blinky Bill, a good reminder of why I’m making my way to many lighthouses, shining light on SPS. 

          With spectacular views of the coast, the miles will melt away, passing through Sulphur Creek, Penguin along the old coast road to Ulverstone & Turner’s Beach, climbing my way to Devonport. Turning left towards Devonport Airport, making my way along the Frankford Highway through Port Sorrell, Glengarry with beautiful countryside surrounding me and sections of roads I haven’t run. I’m looking forward to the experience and stimuli. 

          I’ll cross the Batman Bridge heading north towards Pipers Brook, continue to Bridport through the Boobyalla Plains to the most easterly point of Tasmania, Eddystone Point lighthouse. I know this will be a special moment of the journey and quite possibly an emotional one, knowing what’s on the other side of the Pacific Ocean and why this is happening. 

          Sucking in the ocean air. Hopefully sunny skies hitting my face. I’ll turn around and make my way back to Somerset, 300k/200 miles on the same route, fingers crossed with a tailwind. 

          Returning to Somerset I’ll grab a much-needed massage from Marion’s Massage. I’ll quite possibly stand in Bass Strait at my local beach for some R&R. Once I’m back on the road I’ll head west, passing Doctors Rocks, turning right along the old coast road to Wynyard, another beautiful section of the northwest coast of Tassie.

          In the center of Wynyard I’ll turn right and climb up to the lighthouse at Table Cape. I’ll sit back and enjoy the AMAZING 360-degree views of this beautiful island. Looking east will give me a special buzz knowing I’ve made my way by foot. My Aboriginal ancestors called it a Walkabout, and this one’s mine. 

          With more incredible views to the west overlooking the spectacular Boat Harbor. I’ll trek up Sisters Hills taking in views of the “Nut,” the remains of a Volcano at Stanley. Can imagine thoughts of, “I know who the nut is.”  Only a runner knows the feeling.

          Passing through Rocky Cape and Port Latta with sea views on my right and country views to my left, I’ll cross the Detention River and trot my way to the rural town of Smithtown, turning left at the signpost: Marrawah 50km. This section I’m really looking forward to, as I’ve made many a trip to Marrawah to surf. With more pleasant surroundings and a quiet country road to run on, I’ll hear Lighthouse Beach calling, my destination the most westerly point of Tasmania. 

          It’s a special part of the world and a feeling of the edge, or end of the world. With Antarctica being the next stop, it’s justified. With the incredible forces of mother nature smashing into the coastline, its rugged beauty is awe-inspiring. 

          It will be a surreal feeling being at Lighthouse Beach knowing how I got here. One hundred miles from Home James. If the body is willing, it’s game on, non-stop home in under 24 hours. 

          Real easy on paper.

          Donate now to support Traversing Tassie: Running to Shine a Light on Stiff Person Syndrome

          At The SPSRF, our mantra is “Breaking Through Barriers To Find A Cure.” The only way to do this is to raise funds for research and raise awareness of the condition around the world. The science that informs us about the causes and solutions to SPS will often help find answers to many autoimmune mysteries.

          In 2020, we set a fundraising goal of $540,000. It just so happens that if we can raise one thousand dollars for every mile Shane runs, we will hit our target.

          Whether it is a dollar a mile, a thousand dollars, a sweatshirt or sponsorship – your donation makes a difference

          TTX2 Individual Donation

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          Donation Total: $250.00 Monthly

          #547Challenge

          And if you want to level up your Traversing Tassie support to really bring awareness to Stiff Person Syndrome, join us in the #547Challenge!

          Inspired by Tara and Shane, friend of The Stiff Person Syndrome Research Foundation Stacy Swenton decided to participate in TTX2 COVID-style and created her own challenge in solidarity to help raise awareness for SPS. Are you up to the #547Challenge?

          If you are on any kind of social media, please consider posting a picture of yourself doing the challenge with these words:

          THE #547CHALLENGE. In December, commit to 547 miles, minutes, or reps to shine a light on Stiff Person Syndrome. That’s 17 situps a day. 17 pushups. 17 minutes of walking, running or biking. Donate a dollar a day to stiffperson.org & tag a friend. #547challenge #sps #ttx2 #stiffpersonsyndrome #547 #traversingtassie #beyourownlighthouse #givingtuesday

          The burden is lighter when shared. Thank you for Traversing Tassie with all of us!

          #547Challenge to raise awareness of Stiff Person Syndrome
          Your Sponsorship of The Stiff Person Syndrome Research Foundation supports research to develop better treatments and find a cure.
          Your support will move us closer to a cure for Stiff Person Syndrome.

          All profits from TTX2 purchases go to The Stiff Person Syndrome Research Foundation

          Rep Shane’s Run

          Shop the limited edition Traversing Tassie Collection. All proceeds support The Stiff Person Syndrome Research Foundation.