Shane James has recently completed a 24-day long run to fundraise for the Stiff Person Syndrome Research Foundation, earning about $20,000 by the end of his trek. The run, called Traversing Tassie, was created by Shane and Dr. Tara Zier, the creator of the foundation. Their hope was that the event would bring awareness to stiff person syndrome, along with raise funds for research.
About Stiff Person Syndrome (SPS)
Stiff person syndrome is a rare neurological disorder that is characterized by episodes of painful muscle spasms, progressive stiffness, and progressive rigidity. SPS patients experience symptoms in their torsos, which leads to problems with both gait and posture. At times, it becomes difficult for them to walk or bend over. Affected individuals also see episodes of spasms and a sensitivity to sound and touch, which can be triggered or occur randomly. While medical professionals are unsure as to what exactly causes this syndrome, they do suspect that it is an autoimmune disorder. Research has shown that affected individuals often have large amounts of high glutamic acid decarboxylase antibodies, which points to a cause from the immune system. In terms of treatment, doctors target the specific symptoms present in each patient. They may prescribe benzodiazepines, anti-seizure medications, or other drugs.
About Traversing Tassie
Ultra-runner Shane James and Dr. Tara Zier, creator of the Stiff Person Syndrome Research Foundation, came up with the idea of an epic run to raise awareness and money for SPS. They feel strongly about the event and foundation as they are both SPS patients.
Dr. Zier talks about her diagnosis in 2013, which occurred when she started experiencing severe pain. She speaks about the difficulties that the painful spasms, which can be strong enough to break bones, bring into her life, comparing her life to “the ring.” She says that even the easiest tasks are extremely tiring.
Her experience inspired her to create the foundation, which then led to the epic, 24-day event. In the event, Shane ran around the top of Tasmania twice, which totals to about 550 miles. He ran about the same distance as a marathon every single day. The entire time, he fought through the pain brought on by SPS.
In the end, the event raised $20,000, all of which went to SPS research at Johns Hopkins.
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