The Power of Sharing Your Story
Introducing “The Power of Sharing Your Story,” a special series within our Information and Awareness Newsletter. This edition offers a unique perspective by highlighting the voices of our resilient community members. Through these inspiring interviews, we celebrate the strength, advocacy, and unity that bind us all, reminding us that every story, though different, contributes to a collective journey of hope and support. Below, you will find the courageous and inspiring stories of our community members.
Ollie’s Message
We are proud to share a truly inspiring story from one of our dedicated community members, Oliver (Ollie) Scalzo. In this short, heartfelt video, Ollie talks about how his aunt’s diagnosis and knowing that his grandfather also lived with Huntington’s disease has shaped his understanding of the condition and motivated him to take action in a deeply personal way.
Growing up in a family touched by HD, Ollie has a simple but powerful belief: people cope best when they feel supported in ways that genuinely matter to them. At Huntington’s Victoria, we could not agree more. Having Ollie reach out to us, bring forward this idea, and help make this awareness campaign happen has been a joy to watch. His initiative as a young adult reminds us of the strength of our community; from individuals living with HD to the families and carers who walk alongside them.
As an avid cyclist, Ollie has chosen to channel his passion into an incredible awareness initiative: biking around Albert Park Lake for 24 hours straight. His message is simple but powerful “movement matters”. Whether it’s managing the physical symptoms of HD, supporting mental health, or simply improving overall wellbeing, staying active can make a meaningful difference for everyone.
Click the button below to listen to Ollie in conversation with Tammy!!
Sue
Sue’s dedication spans over three decades as a Youth Worker at Anglicare Vic, where she supports homeless young women fleeing domestic violence. Beyond her professional commitment, Sue finds comfort in family gatherings, the pages of a good book, the thrill of sports, and the occasional glass of whiskey.
Sue is a dedicated board member and volunteer at Huntington’s Victoria, as well as a peer leader for the Huntington’s Community Connect forum—a beacon of compassion and commitment in our community. Her journey as an advocate for those affected by Huntington’s disease is not just a story of commitment, but a testament to the power of friendship and unwavering support. Sue’s path intertwined with this cause through her profound connection with her dear friend Lynne, sparking a flame that has burned brightly for many years. From the moment Lynne’s diagnosis surfaced, Sue stood by her side, navigating the complexities of the journey together. Even before the testing, their bond was unbreakable, but it was during those pivotal moments that Sue’s advocacy truly flourished. Her voice resonates deeply within the Huntington’s disease community, echoing the importance of empathy, understanding, and relentless advocacy. In Sue, we find not just a remarkable individual, but a guiding light illuminating the path towards greater awareness and support for those living with Huntington’s disease.
Bek and Keith
Bek and her father, Keith, are devoted members of the community, actively supporting Huntington’s Victoria’s initiatives like May Awareness. Their commitment to advocacy stems from their experiences with Huntington’s disease within their family.
Bek was motivated to share their story after witnessing her Nan’s battle with the disease. She felt a strong need to raise awareness and educate others, believing that greater understanding could make a difference in the lives of those affected. Keith, despite living with Huntington’s disease, continues to lead an active lifestyle. His resilience serves as an inspiration, showing others that it’s possible to navigate this challenging journey with hope and determination.
Bek also emphasises the importance of sharing one’s experiences, understanding that doing so can profoundly impact others who may be facing similar challenges. By opening up about their journey, Bek and Keith hope to support and empower others in the Huntington’s community.
Teddy
Teddy is a new member of the Huntington’s Community Connect forum and has spent several years caring for her father, who has been diagnosed with Huntington’s disease. Through attending Huntington’s Victoria events and hearing others’ stories, she found support along her journey. Now, Teddy is eager to give back to the community that has supported her, offering advice and encouragement to others who may be in a similar situation.
Despite the challenges of living with Huntington’s disease in the family, Teddy and her loved ones continue to enjoy beautiful beach walks, care for one another, and seek out the right support. We encourage you to watch Teddy’s story, and don’t hesitate to say hello to Teddy at our future events or on the HCC forum!
Melissa
Melissa is a devoted carer who, inspired by the stories shared in this newsletter, found the strength to share her own. Her story is one of remarkable honesty and vulnerability, highlighting the immense sacrifices made by carers and the deep humanity that defines their love. To anyone who sees themselves in Melissa’s words, remember that your experiences matter, your struggles are recognised, and you are never alone.
Michelle has a family history of Huntington’s disease, and the condition has shaped many aspects of her life. She grew up watching her nan experience symptoms from the age of 40, and in Year 11, she chose to research Huntington’s disease for a school project. This was a turning point—it deepened her understanding of its impact and the genetic risks her family faced.
For years, Michelle lived with the uncertainty of her genetic status. She focused on studying, travelling, and embracing life with friends and family. When the time felt right for her and she was preparing to start a family, she made the decision to undergo genetic testing. As she moved forward, Michelle realised how essential it is for carers to receive the support they need, which inspired her to transition into working with and supporting carers.