Duchenne Muscular Dystrophy – A Rare, Incurable Genetic Disease Affecting Mostly Boys

Duchenne Muscular Dystrophy – A Rare, Incurable Genetic Disease Affecting Mostly Boys


  • World Duchenne Awareness Day 2025
  • Felix – the boy at the heart of iüLabs
  • What is Duchenne Muscular Dystrophy?
  • Symptoms and Progression
  • Current Treatments and Research
  • Felix, Alasdair and the birth of iüLabs
  • Why Awareness Matters
  • iüLabs Product Range
  • References

 

World Duchenne Awareness Day 2025 highlights the rare and devastating genetic condition, Duchenne muscular dystrophy (DMD), which affects 1 in 5,000 new-born boys worldwide. The day emphasizes raising awareness, supporting research, and improving access to care for patients and families.

At the heart of this story is Felix, a young boy from England whose journey with DMD inspired the founding of iüLabs. The post explains the genetic basis of DMD, its symptoms and progression, and current treatments, including physiotherapy, medication, and emerging gene therapies like CRISPR and exon skipping.

Felix’s father, Alasdair, partnered with experts to create a plant-based formula to support his son’s wellbeing, forming the foundation of iüLabs. Beyond medical advances, raising awareness is crucial for promoting visibility, equality, and giving families a voice in the fight against Duchenne.

This post combines scientific insights, personal stories, and advocacy, underscoring the importance of global support for those affected.

world Duchenne day logo

World Duchenne Awareness Day 2025

Every year on 7 September, the world comes together to mark World Duchenne Awareness Day (WDAD). This day is dedicated to raising awareness of Duchenne and Becker muscular dystrophy, two rare and devastating muscle-wasting conditions.

One in 5,000 new-born boys is affected by Duchenne muscular dystrophy (DMD). While this may sound like a small number, it represents more than 250,000 patients worldwide – each with families, carers and communities profoundly touched by the disease. Parents and advocacy groups across the globe have united to push for better access to care, advance research, and share vital education.

 

alsadair robertson, felix, in hospital as he has appointments for his muscular dystrophy

Felix – the boy at the heart of iüLabs

Felix is a happy boy from England who loves playing with Lego and is closely connected to the founding story of iüLabs. At first glance, Felix seems to enjoy a carefree childhood. Yet, on closer inspection, it becomes clear that his life is far from typical.

His daily routine is punctuated by doctor’s appointments, clinical trial visits and physical challenges. Even during playtime, it is evident that Felix is not as agile as other children his age.

When Felix was just four years old, his parents, Robyn and Alasdair, received the devastating diagnosis: Duchenne muscular dystrophy.

DMD has no cure, and treatments are limited to slowing progression and alleviating symptoms. Without the relentless drive of Felix’s father Alasdair to better understand the disease and seek new ways to improve his son’s quality of life, iüLabs would never have been founded.

Our company’s origin is deeply intertwined with Felix’s story, making this cause especially close to our hearts. That is why we want to use this post to inform and raise awareness about Duchenne muscular dystrophy.

close up image in pink graphic of disease progression of DMD

What is Duchenne Muscular Dystrophy?

DMD is a genetic disorder caused by mutations in the dystrophin gene, which is responsible for producing the protein dystrophin.

  • Role of dystrophin: This protein stabilises muscle fibres and the cell membrane during contraction. Without it, muscle cells sustain continuous damage, eventually breaking down and dying.

  • Genetics: Because the dystrophin gene is located on the X chromosome, DMD follows an X-linked recessive inheritance pattern. It primarily affects boys, who have only one X chromosome. Girls usually carry a second “backup” X chromosome, which compensates, although some female carriers may experience mild symptoms.

three young boys that are looking up to the camera and smiling on a garden of grass

Symptoms and Progression

Symptoms usually emerge in early childhood and worsen progressively:

  • Early signs: difficulty walking, frequent falls, delayed motor development, a waddling gait.

  • Loss of mobility: Most boys lose the ability to walk independently between ages 6 and 13.

  • Later complications: scoliosis, difficulties in breathing, swallowing and speaking, heart problems, and sometimes cognitive impairments.

  • Life expectancy: Sadly, most patients pass away in early adulthood due to respiratory or cardiac complications.

young boy with a blue jumper sat in a wheelchair in front of some grey steps

Current Treatments and Research

There is no cure for DMD at present, but a combination of therapies can help manage the condition:

  • Physiotherapy and orthopaedics to preserve mobility.

  • Medications, such as corticosteroids, to reduce inflammation and slow muscle degeneration.

  • Cardiac and respiratory care to manage complications.

Research is advancing rapidly. Promising approaches include:

  • Gene therapy – replacing the mutated dystrophin gene with a functional copy.

  • Exon skipping – enabling cells to bypass faulty gene sections and produce shorter but functional dystrophin.

  • CRISPR-Cas9 gene editing – repairing the defective gene at its source.

Several of these strategies are already in clinical trials, and results offer hope for the future.


Felix, Alasdair and the birth of iüLabs

Despite the challenges, families affected by DMD show remarkable resilience. With the right care, children and young adults can live fulfilling lives.

Felix’s story is a powerful example. Thanks to Alasdair’s tireless search for solutions, he connected with Dr Wolfgang Brysch – a physician and scientist specialising in Duchenne and the health effects of secondary plant compounds.

Together, they developed a plant-based formula designed to support Felix’s energy and wellbeing. This innovation not only helped Felix but also became the foundation of iüLabs – a company built on hope, science and the determination to make a difference.

Read more about Our Story and Felix here.

Alasdair Robertson with his son Felix in hospital with a stethoscope looking at each other

Why Awareness Matters

Raising awareness of Duchenne is not only about science – it is about visibility, equality, and giving families a voice. On 7 September, join us and many others worldwide in supporting:

  • Continued investment in research and innovation

  • Improved access to care and treatments

  • Greater understanding of the impact of Duchenne on families

By raising our voices together, we can accelerate progress towards a brighter future for all those affected.

 

iüLabs Product Range

Alongside our special drink created for Felix and other Duchenne boys, iüLabs offers a full range of nutritional supplements—redefined for real results. Powered by our patented SoluSmart® technology and backed by science, each product is designed to work with your body to support lasting health from the inside out.

Our bestselling formulas, including iüVitalizer for mental and physical performance, iüMove for joint, cartilage, and bone support, and iüProtect for immune health, combine carefully selected bioactive ingredients to deliver results you can truly feel. It’s why 90% of our customers continue to choose iüLabs, experiencing smart science with real impact every day.

iulabs all natural supplement drinks, iumove, iuprotect, and iuvitalizer

References

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