THIS Volunteers’ Week (2 – 8 June 2024) a dedicated volunteer is calling for others to help make a difference.
Tahira Mathur, 31, from London, volunteers for Muscular Dystrophy UK, the leading charity for more than 110,000 children and adults in the UK living with one of over 60 muscle wasting and weakening conditions.
In 2022, after undergoing MRIs and genetic testing, Tahira was diagnosed with an ultra-rare genetic condition called GNE myopathy. This causes muscle weakness and wasting, typically starting in the feet and lower limbs before advancing to other parts of the body. While Tahira is still able to walk with the support of orthotics and a walking stick, her mobility is significantly affected, with uneven terrain, crowded spaces and bad weather making movement especially challenging.
Mother of one Tahira said:
“My journey to a diagnosis wasn’t straightforward. In my early 20s, I started to notice small changes in the way that I walked. I was struggling to lift my feet, often tripping and falling very frequently. Climbing stairs became particularly challenging, I couldn’t run anymore and even simple everyday tasks became harder.
“It took a few years, but receiving a diagnosis was a huge relief. Then the reality hit me quite hard – this was a progressive condition with no cure. What would my future look like?”
Despite the uncertainty, Tahira has chosen to turn her experience into purpose. She’s a passionate advocate, committed to raising awareness and giving back to others in the muscle wasting and weakening community.
Tahira is a member of Muscular Dystrophy UK’s Lay Research Panel, made up of people affected directly or indirectly by a muscle wasting condition. The panel assesses research grant applications to ensure they are relevant to the charity’s strategy and people living with neuromuscular conditions. While there is currently no cure for Tahira’s condition, she remains hopeful that progress in research could change that for future generations.
In addition to this, Tahira plays an active role in raising awareness and vital funds for Muscular Dystrophy UK. Her dedicated family fund, Tahira’s Team, was set up late last year to support the charity’s work in funding ground breaking research and providing support for individuals and families. Tahira, shares her lived experience and uses her voice to raise awareness of the charity’s mission to improve awareness, drive greater visibility and inclusion and inspire action.
Tahira said:
“Being diagnosed with a neuromuscular condition can feel incredibly isolating. It’s a lot to process and it’s easy to feel like no one really understands. That’s why charities, like Muscular Dystrophy UK, are so important – they offer not just practical support, but a real sense of connection. Whether it’s through in-person or virtual meet-ups, Information Days or simply being a trusted place to turn when you’re navigating a life-altering diagnosis, that support can make all the difference.
“Volunteering for Muscular Dystrophy UK is an opportunity for me to try and help make a difference. It’s given me a sense of purpose and a community of people who truly understand the unique challenges of living with a neuromuscular condition. I’d encourage anyone with time or lived experience to get involved. Together, we can make a difference.”
Calley Clay, Volunteer Engagement Manager at Muscular Dystrophy UK said:
“Volunteers’ Week is a great chance to celebrate all our incredible volunteers within the muscle wasting and weakening community, like Tahira, who dedicates her time to help make a difference.
“We wouldn’t be able to do the work we do to fund groundbreaking research and life-changing support without her valuable and generous contribution. A huge thank you to Tahira for all her commitment and to the rest of our volunteers for supporting the cause.”
Tahira is part of the charity’s South Asian Neuromuscular Community group. Discover more at: musculardystrophyuk.org/support/services/support-groups.
Find out more about how you can volunteer with Muscular Dystrophy UK: musculardystrophyuk.org/volunteering.
For more information or to help support our work, visit: musculardystrophyuk.org or call our free helpline on 0800 652 6352 (Mon – Thu 10am – 2pm).
