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A new research nurse has been appointed at University Hospitals Birmingham (UHB) to help people living with motor neurone disease (MND) access clinical trials and research studies.

Sindiso (Sindy) Masuka has joined UHB as a dedicated MND Research Nurse, in a role funded by the Motor Neurone Disease Association (MND Association) as part of the rollout of its ambitious £7.2 million Research Nurse Network.

The national initiative aims to give more people with MND the opportunity to take part in research, regardless of their individual circumstances or where they live.

Research nurses play a vital role in providing clear information about the studies available to people with MND, identifying opportunities and supporting them through the process.

They explain what participation involves, provide ongoing guidance and help patients make informed decisions about taking part in research.

For people living with MND and their families, this support can make research feel more accessible and achievable.

Speaking about her new role, Sindy said: “It is both an exciting and humbling opportunity. MND is a complex condition with a profound impact on individuals and families, and I feel privileged to support people in accessing research opportunities that may help shape the future of care and treatment.

“What excites me most is the potential to make a difference, both for current patients and for future generations affected by MND. Research offers hope and being able to connect patients with studies while supporting their journey is incredibly rewarding.”

Motor neurone disease (MND) is a life-shortening neurological condition that affects the nerves controlling movement. It causes progressive muscle weakness, which can affect how a person walks, talks, eats, drinks and breathes.

The MND Association launched its Research Nurse Network in 2024, and the first fully funded research nurse was appointed in 2025. Over time, MND Association Research Nurses will be embedded in all 24 MND Care Centres and Networks in England, Wales and Northern Ireland.

Through the network, it is hoped more people with MND will feel empowered to take part in important clinical trials. The network also aims to remove practical barriers which can prevent people from taking part in research, including the distance from specialist centres, travel costs and a lack of support.

The Association’s lead research nurse Kate Hartley said: "Research can offer hope and a sense of purpose for many people affected by MND.

“Having a dedicated Research Nurse means people can access clear information, talk through their options and receive support every step of the way.

“We're delighted to welcome Sindiso to the team and look forward to the positive impact she will have for people living with MND and their families across the region."

Find out more about Sindy and her new role here: Get to know Sindy Masuka | MND Association