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.
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!