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AUTUMN 2025 InTouch | 17 protein. It is approved in the European Union, Russia, Brazil, and the UK for patients with specific nonsense mutations. • Anti-Inflammatory and Antifibrotic Agents: Vamorolone is a steroid-like drug with potentially fewer side effects, aimed at reducing inflammation and fibrosis in muscle tissue. It has been approved in the US and European Union. • Cell therapy: Still in the research phase, cell therapy for DMD aims to repair damaged muscles using special cells like stem cells. These treatments involve two main strategies. The first is using the patient’s own stem cells, which are modified in the lab to produce dystrophin and then reintroduced into the body. The second strategy involves using healthy donor cells that naturally produce dystrophin, which are then transplanted into the DMD patient. Different types of cells, such as myoblasts and cardiosphere-derived cells (CDCs), are being studied for their potential benefits. • Utrophin Modulators: These drugs are being explored as a therapeutic approach for DMD by way of increasing the production of utrophin, a protein similar to dystrophin, to compensate for the lack of dystrophin in muscle cells. • CRISPR-Cas9 Gene Editing: Research is ongoing into using CRISPR technology to correct mutations in the dystrophin gene directly, although this is still largely in the experimental stage. Please note that while these developments are promising, many are still in clinical trial phases, and their long-term efficacy and safety are under investigation. For the most current information, it is advisable to consult recent publications or clinical trial registries. Resources Please go to the MDA website www.mda.org.nz for more information on supports available to you. Employment Seeking and maintaining paid employment can be challenging for people with Duchenne, especially as their condition progresses. Despite these challenges many people in New Zealand with neuromuscular conditions carve out a career and work productively and successfully for a number of years. Research has shown that a paid occupation is achievable for others with the correct supports and environmental conditions (flexibility, adaptations, employer recognition, peer support). When choosing a career, if possible, choose something that you are passionate about and that meets your physical needs now and into the future as your condition progresses. Consider the workload; repetitive tasks, physicality of the job, or how much speaking is required if you struggle with slurred speech. Ask about opportunities for job shadowing to get a sense of daily tasks and expectations. Consider when are you more alert and more fatigued. DUCHENNE MUSCULAR DYSTROPHY (DMD) Is there flexibility to work from home on certain days or to be flexible with work schedules so you can incorporate rests if needed? Will the job accommodate flexibility to meet these needs so you can be more productive in your role? Volunteer work is an opportunity to build up skills and experience. It creates the same feelings of self-worth, sense of identity and purpose as a paid job. The New Zealand government recognises the value people with a disability can bring to a workforce and the under representation of this community in the labour market. They have set up a number of employment related services and supports for people with a disability, including training and apprenticeships. The list of all government-funded or supported services are available on the website Employment New Zealand. Diversity Works New Zealand (formally the EEO Trust) is the national body for workplace diversity and inclusion. They can be contacted on 0800 348 377 or by visiting their website diversityworksnz.org.nz/ Remember, it is illegal for employers to discriminate against people because of ethnicity, sexual orientation, gender, marital status, religious belief, or disability. Equal rights are demanded by the Human Rights Act, 1993, and the Equal Pay Act, 1972. You can seek information about your rights on Health and Disability Commissioner website or Human Right Commission website. For a list of the sources used, please go to www.mda.org.nz/neuromuscular-conditions/ overview/muscular-dystrophies/duchenne-muscular-dystrophy-dmd/