Team Spencer was set up by Rick & Ruth Steven in memory of their son Spencer. Spencer Steven was born in 2006 with Spinal Muscular Atrophy (SMA), the number one genetic killer of children under the age of two. SMA manifests itself in muscular weakness due to loss of the motor neurons of the spinal cord and brain stem. The earlier the symptoms appear the shorter the life span. The onset is sudden and dramatic and the disease is fatal.
During Spencer’s amazing life, his parents and sister were aided by fantastic support from PMH and the staff who provided medical and emotional assistance for their journey with Spencer. When Spencer died at 7 months old, Rick and Ruth planned a fundraising baseball match as a way of giving back to PMH for all they were given. In the 4 years since that first game, TEAM Spencer has now grown to include a charity ball and major event in conjunction with Perth HEAT and has raised over $140,000.
When Rick and Ruth met with Muscular Dystrophy Western Australia (MDWA) in 2010 and learnt of the amazing research being done by Professor Steve Wilton and his team, they made the decision to donate the funds raised through TEAM Spencer to MDWA to help fulfill their vision of finding a cure for SMA.
Professor Wilton and his team are developing “genetic band aids” that can modify gene expression. By masking the disease-causing portion of a gene message, it is possible to restore expression of a protein lacking in the most common and severe form of childhood muscle wasting, Duchenne MD. Trials of this compound in children in the UK have confirmed proof-of-concept. These genetic band aids can be modified to treat other forms of muscular dystrophy, including Spinal Muscular Atrophy.
Two PhD Scholarships for SMA Research have now been established as a result of the funds raised through TEAM Spencer.
TEAM Spencer is now affiliated with Channel 7 Telethon. Telethon is proud to be helping Muscular Dystrophy WA make a difference.