Vanessa (Ness) Tulenew – Community Advisory Committee Member

I am married to my best friend and a mum to a beautiful boy – Ezra who is a cystic fibrosis warrior. I grew up in Canberra, spent a lot of time at the South Coast as a child and moved, with my family, to the beautiful Sunshine Coast in 2021.

As a Community Advisory Committee Member, I look forward to supporting other families, to provide guidance and mentorship as they navigate the challenges of living with cystic fibrosis. I am comfortable sharing my lived- experience, perspective and advice on cystic fibrosis related issues, and advocate for and raise awareness about cystic fibrosis in the broader community.

I do my best to keep up with being a wife, parent, carer and balancing full-time work. In my spare time you will find me at the beach, gym, pilates, hiking in nature or training for my next fitness event. I am passionate about health and well-being through fitness and how physical activity plays such an important role in keeping the body (especially lungs), mind and soul healthy.

Our family loves travel and exploring and we were determined not to let Ezra’s diagnosis stop us from doing what we love. Yes, it’s more challenging but we have been strengthened by the experiences associated with managing Ezra’s illness and have found a sense of cohesiveness and pride which has built our resilience as a family. We won’t let this disease define or stop Ezra (or us) from achieving our dreams, live our lives to the fullest and jam pack as many adventures in as possible!

I believe a strong support system is an important aspect of overall well-being, especially for those managing a chronic illness. When we moved to QLD, I joined Cystic Fibrosis Queensland because I wanted to have access to the support and advice and learn from other people who share similar life experience.

I am not only passionate about advocating for cystic fibrosis, I am also extremely passionate about educating and advocating for disability, neurodiversity and mental health. I am an ally and mentor and want to help create broader awareness and contribute to the breaking down of barriers, stigma and negative assumptions.

I am enthusiastic about the opportunity to work with the CAC and community members and look forward to sharing stories and contributing with the cystic fibrosis community. You can connect with me via email