Kicking SPS – Fight On !!!

The story of Shane

I have Stiff-Person Syndrome (SPS), a rare neurological disorder affecting about one in a million people. In 2006, I discovered I had a broken back, the cause a mystery. At the same time, I suddenly was racked with severe muscle spasms and seizures.

After months in the hospital to fix my back, I was frightened that my back would break again from SPS. No longer able to work, SPS was taking my life away. I felt like I had no future and was losing hope. Muscle spasms and other symptoms from SPS were incredibly painful. I never knew pain like that existed. I spent three months in oncology receiving blood infusions and Intragam to kick start my immune system. My body was attacking itself – I’d lost nearly half my body weight and was unable to eat.

When I was diagnosed18 months later, in 2007, my Neurologist told me the medication would either work or it wouldn’t. The medication was barely helping so I was sent home from oncology. It was one of the scariest days of my life. I rang NORD out of desperation as there was no research on SPS in Australia. I spoke with Steph who was incredibly helpful, a lifesaver in ways as she gave me hope. I told her about throwing my walking stick away and how I started to run, more like an excruciating shuffle on my local beach. She gave me sound advice that helped me through my recovery.

About the same time, I also discovered the Genzyme / NORD team running for rare diseases – they run the Boston marathon each year to raise funds for NORD. The Boston marathon was a childhood dream of mine, but I was in such a bad way from SPS, I wouldn’t dare dream of running this prestigious marathon. Using a walking stick and barely able to move, running a marathon was the furthest thing from my mind.

Then, I decided to fight back. It felt like fight or flight and seemed ridiculous, but running was my way of proving to myself the will to live and it worked. I forced my body to work again, rewiring the neuro pathways and rebuilding muscle fiber that SPS had stripped away from me. I finished the 2011 Boston marathon as part of the Genzyme Team with Phil Madeira, my guide runner, by my side. Since then, I have run in the 2012 and 2013 Boston marathons and will proudly wear the Genzyme team shirt in 2014.
Here is a short film on my story:

I am indebted to NORD and that is why I am running 28 marathons in 28 days during February, 2014, to raise funds for this great organization that brings hope into many people’s lives. Follow my progress on
NORD provided hope when all felt lost, filled a void from the isolation of living with a rare disorder. I can`t thank the people that support NORD or rare diseases enough. To fellow sufferers of SPS and other rare disorders, I hope you can find some peace. Good luck, Fight On!!!