MND Connect – more than just a helpline

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Scott Maloney is the Association’s MND Connect Team Leader. Following Alun’s volunteering roles, Scott explains more about MND Connect, how they can help, and how they work with the Research Development team.

About MND Connect

The MND Connect Helpline is the ‘frontline’ of the MND Association. They take and answer calls and emails from anyone living with or affected by MND – so that’s people living with the disease, carers, family members and friends, GPs, Nurses, Occupational Therapists, Speech and Language Therapists – absolutely anyone!

Last year, they answered around 8,000 calls and emails on a huge range of topics. Connect is a small team, but they have a huge range of knowledge and experience. Crucially, if they don’t know the answer to a query, they will almost certainly know someone who will. They can provide information and signposting which will help people navigate the benefits system, help people get the support that they need and help them get the assistive technology which can enable people to maintain their independence for as long as possible.

Connect also provide emotional support to anyone affected by the condition – sometimes people just want to talk and be listened to. They want to talk about their fears, hopes and triumphs but may not have anybody in their immediate circle that they feel comfortable having these conversations with. Find out more about the MND Connect team here.

A link with the Research Development team

People often ask the Connect team questions about the genetics of MND or for in-depth information on proven or unproven treatments for the condition and in these instances, the team will liaise closely with our Research Development team to ensure that the information given is accurate and up-to-date. The team also receives regular updates from the Research Development team as part of their on-going learning about MND.

The MND Association’s vision is a world free from MND. Realising this vision means investing more in research, further developing partnerships with the research community, funding bodies and industry, while ensuring that advances in understanding and treating MND are communicated as quickly and effectively as possible. Our Research Development team, composed of 11 members, work hard to achieve this. Principally, the Research Information team within this are involved in communication activities including this MND Research blog.