At 35, Ron Hobden had what many would consider a perfect life. He was an avid marathon runner and enjoyed playing football with friends, all while balancing a rewarding career and a loving young family. However, everything changed dramatically when he received a diagnosis of Motor Neuron Disease (MND).
Similarly, 41-year-old Sharon Kirkwood was living a fulfilling life with her devoted husband and two children, while actively participating in netball. The impact of MND on her life and family has been profoundly devastating. She expressed her heartbreak, noting, “It’s not only my life that has been destroyed, theirs has too.”
Both Ron and Sharon are now dedicated to maximising their remaining time together and are advocating for a national database to better manage information related to MND cases. Sharon highlighted the struggles that newly diagnosed patients face, stating, “If the registry had already existed, those first overwhelming and terrifying six months could have been streamlined and made so much easier.”
As they continue their journeys, Ron reflects on the potential advancements that a comprehensive national registry could facilitate. “I’m now seven years into my journey… I do wonder how much closer to a cure we would be if the type of data that a national registry would provide was already available.” He remarked that while MND currently feels insurmountable, there is hope for a future where it does not have to be deemed a death sentence.
Ron and Sharon’s stories shed light on the harsh realities of living with MND and the urgent need for improved resources and support systems for those affected. Their commitment to advocating for change serves as a beacon of hope for many facing similar battles.