Tuesday, 17 October 2023
Wannon Electorate: Creutzfeldt-Jakob disease
I rise to thank a wonderful group of Wannon residents who ran with me or supported the run for Creutzfeldt-Jakob disease. To raise awareness and much-needed funds for CJD, we went from Parliament House here in Canberra to Warrnambool—some 950 kilometres. Matty Stewart, the key ideas man and organiser who lost his father, Bobby, to CJD, and James Kenna, a gun runner and gun golfer who lost his father, Jimmy, to CJD, joined with me on this journey with some wonderful support. I lost my mother, Marie, and my Aunty Helen to CJD.
Fellow runners Greg 'Eyes' Kelson, Billy Edies, Patty Paton, Josh Dwyer, Marcus Norton, Mark Vaughan, Leon Brooks and Joss Brooks—the Brooks brothers—Chris O'Connor, and our wonderful support crew, Jack, Gerard and Danny Kenna. We ran and we had a lot of fun, and we did some really important work. We raised over $80,000, which will go into research for CJD.
Up until now, there has never been a cure for CJD. Once you're diagnosed with it, it's a sentence. For the first time—and we heard this news 24 hours before we headed off—there will be a trial to find a cure for CJD. The co-chair of the CJD family support group, Suzanne, was there with us to see us off in Canberra last Saturday week, along with the NRL Canberra Raiders female coach, who gave us a very inspirational speech to head us on our way. The fun included a guest appearance by one of the lead singers of a folk band called Old Melbourne Road. David Murphy came and sang for us, but he also recounted the story of how he lost his mother to CJD at about the same time I did. He had never spoken about it because of the stigma associated with it. We had a lot of fun that night, like we did right along the trip, and we got a wonderful welcome when we arrived back in Warrnambool this Saturday.
We've made lifelong friends through this journey. The bond that was built between the group of us who did this 950-kilometre odyssey will last forever. I want to thank everyone who ran, who supported us, who donated, who tooted their horns and who shared on social media. CJD is on the way to getting a cure because of some of the work that we did.