Run for SOD1

My name is Ryan Sandeman and I am fundraising for the Motor Neuron Disease Research Institute of Australia (MNDRIA).

During March 2016, I will be running from Canberra to Melbourne (about 720 Km) over a period of 14 days (about 52 km per day). Please sponsor my run and donate for this important cause.

MND is a progressive degenerative disorder of motor neurones in the spinal cord and brain. Loss of these cells results in weakness and wasting of the muscles. The disorder usually starts in middle life and the effects of MND (initial symptoms, rate and pattern of progression, and survival time after diagnosis) vary significantly.

About 10% of MND is ‘familial’; that is, there is or has been more than one affected person in a family.

People with familial MND have the disorder because of a mutation in a gene. A mutation is an error in the genetic code, which causes a gene to work abnormally. People with genetic mutations can pass these onto their children. If a person has an MND-related genetic mutation each of their children has a 50/50 chance of inheriting the MND-related genetic mutation.

People who inherit an MND-related genetic mutation have a high, but as yet uncertain, chance of developing MND during their lifetime.

My Grandfather presented with MND symptoms in his early 80’s and died on 27 July 2015. My cousin was diagnosed in her early 30’s, and she suffers from a rare variation known as  “distal motor axonopathy”. 

Genetic testing conducted with my cousin and grandfather has revealed a genetic abnormality on the DNA coding sequence of the Superoxide Dismutase 1 (SOD1 gene).  In laymen’s terms, the SOD1 gene is responsible for MND within our family.

Please dig deep and help finde a cure.