When we think of people with disability and advocacy, we may automatically think about them advocating for disability rights. However, for people with disability, there are a range of other political, environmental or social issues that affect their lives. In this blog article, The Loop community member and Muscular Dystrophy Foundation Australia Policy and Advocacy intern, Jack, takes us through his advocacy journey.

My Journey with Becker’s Muscular Dystrophy and Advocacy

I was diagnosed with Becker’s Muscular Dystrophy at 12, though signs of the condition had appeared earlier, such as larger calves, difficulty with physical activities, and frequent injuries. Despite these challenges, I had a relatively normal childhood filled with sports, school, and friendships. Transitioning from an unrestricted life to one where I was worried about maintaining basic mobility after my diagnosis was difficult. I adapted my routine, avoiding running and stairs, and moving my bedroom downstairs.

At the beginning, I was devastated that I could no longer play sports and run around with my friends. I would always say no to things without a reason because I was uncomfortable sharing the experiences with my condition. Even just thinking about all the things that I struggled with and finally having a reason made me feel angry and frustrated. However, having to deal with all these things didn’t just challenge me but opened the door to a big shift in how I thought about health, fueling my current passion for advocacy.

With support from doctors at UCLA, physiotherapists, massage therapists, and specialists, I learned to manage my condition. My relationship with health transformed as I developed a tailored exercise routine, enhanced my coping skills, improved my diet for recovery, and created a personalised plan that included stretching, foam rolling, and vibration plate.

As part of this journey, I launched Vitality Pod, a blog sharing insights on managing health, mindset, sleep, nutrition, and recovery. While I don't update it as often now, I continue to write occasionally, helping others with Becker’s Muscular Dystrophy and similar conditions.

My mission to positively influence the health and well-being of others has been deeply shaped by my experience with muscular dystrophy. It’s also why advocacy is so important to me, particularly in the areas I’m most passionate about and that means the most to me. Being able to advocate for positive changes in health makes me feel empowered and hopeful that I can use my journey and experiences to help others have an easier or, at least, more supported journey. The complexity of emotions has come together and shaped the joy and gratitude I gain from helping others in this way.

My Interest in Public Health

I am pursuing a Master of Public Health (MPH) at Macquarie University, after completing a Bachelor of Human Science with a major in Public Health: Policy and Promotion. I’m actively involved in public health advocacy through my work with the Public Health Association Australia (PHAA), where I contribute to policy development and participate in conferences.

As a Unit Representative for Introduction to Epidemiology and Biostatistics, I gather feedback from my classmates and communicate it to professors to improve the course. I am also part of a team revamping the MPH student committee, which organises events, gathers feedback, and collaborates with faculty to enhance the academic experience.

My Advocacy Efforts

• Climate Change and Health: I led a panel event titled “Climate Change and Health: What Can I Do as an Individual?” during Climate Action Week in March 2025. The event discussed individual actions on climate change and health, with 50 attendees. You can watch a recording of the event here: Climate Change and Health: What Can I Do as an Individual?.

• Panel & Letter: I joined the Youth Generations Day panel for Climate Action Week, where I presented a letter urging global leaders to take action on climate change. I plan to continue this advocacy with Australian Members of Parliament. You can see a short version of the letter on YouTube, and read the letter.

• Volunteer Work: As a Policy and Advocacy Intern at Muscular Dystrophy Foundation Australia, I’m learning how to drive change in health policies related to neuromuscular conditions and disability. The most recent event I went to involved the opening of IncludeAbility 2.0, an initiative enhancing workplace equality for those with a disability.

Working part-time at an organisation called Marlee

I work part-time at Marlee, a company that fosters engaging and supportive work cultures. As a Research and Customer Support Lead, I assist in developing company reports and publishing research. I’ve contributed to Generation Z research, explored work motivations in the USA and Thailand, and facilitated student leadership workshops. This role provides me with a meaningful opportunity to make a positive impact on the lives of others.

Ongoing Learning and Community Engagement

To further my knowledge in public health and the environment, I attend events hosted by organisations like Muscular Dystrophy NSW, Australian Human Rights Commission, and Sweltering Cities. I recently participated in the Beat the Heat Forum on the new Heat Smart City Plan for Greater Sydney and other events like the Launch of Equality at Work and a Queer Tenancy seminar.

I am enthusiastic about getting involved with an organisation called Climate Writers to harness the power of writing as a tool for change, particularly through letter-writing campaigns to Members of Parliament. They have monthly letter-writing workshops that I will begin attending in June.

How These Efforts Make Me Feel

I also want to dedicate more time to sharing how this journey makes me feel.

Investing in the development of my public health skills is truly significant to me. I know that moving into this field will allow me to maximise my impact on the issue closest to my heart—health. Everything I do is aligned with this goal. At times, I feel demotivated and overwhelmed by the obstacles in front of me, such as discrimination, climate change, pandemics, and the poor health outcomes affecting many groups in society. However, by volunteering, attending meaningful events, and focusing on my studies, I find genuine satisfaction. It makes all the struggles worthwhile. If anything, the challenges make my efforts even more meaningful. I can look back at my progress, celebrate the milestones I've reached, and appreciate the moments when others resonate with what I care about.

I hope that whatever you may do, you find the same sense of satisfaction and joy from it that I find in my work. It makes all the struggles and negative emotions worth it.

Concluding Thoughts on Making a Difference

I’m in an exploratory phase of my journey, trying different paths to see where I can make the most impact. There are countless ways to contribute, whether through advocacy, community building, or personal growth. I encourage you to explore what feels right for you and take action in a way that brings both individual fulfilment and positive change to the world.

To get involved with advocacy, I would encourage you to reach out to an organisation in the space that you are interested in. Of particular note to me I would encourage you to reach out to Rachel Spencer, the Advocacy lead at Muscular Dystrophy Foundation Australia (if you are interested in the neuromuscular space), Climate Writers (if you are interested in sustainability) and Public Health Association Australia (if you are interested in public health).