Charity Spotlight is a weekly series dedicated to showcasing the incredible work of Jersey’s charities – from grassroots initiatives to islandwide movements, we’ll be sharing the stories of the people working tirelessly to support those in need and the importance of leadership in guiding that work.
Each week, Express hears from a charity leader on their biggest challenges and successes, what leadership and wellbeing truly mean in the third sector, and their hopes for the future.
Next up is Motor Neurone Disease Association (Jersey) – a charity dedicated to supporting islanders affected by the disease, as well as their family and friends.
The charity’s mission is to support those living with the disease and ensure they can remain in their home for as long as possible by providing the relevant support and funding.
Express caught up with Don Connolly, Chairman of Motor Neurone Disease Association (Jersey), about the most unexpected thing about working in the charity sector and the most inspiring success story he’s witnessed through their work…
A common misconception about what we do is…
How devastating Motor Neurone Disease is, as people still don’t fully understand what the disease does. It is an incurable disease, and, following a diagnosis, average life expectancy is only between two to five years. In that time, while the brain remains unaffected, it leaves the individual trapped in their own body unable to move or speak, as all their muscles waste.
The most rewarding part of our work is…
Being able to keep people with MND living at home with their loved ones for as long as possible through the progression of their illness. This is the main ethos of our charity, and we do this through the funding of essential items like wet rooms, stair lifts, hoists, other medical equipment, and the provision of care services.
The biggest challenge facing our charity right now is…
Recruiting volunteers to assist those with MND on the island. Our charity trains volunteers to allow them to visit people with MND through the progression of their illness, in order to offer informed support to them and their families. These MND Association Visitors are the lifeblood of our charity, providing a vital link between the people living with MND and our committee, to understand how best our charity can assist them. Presently, we are in need of finding people with the right skills to train to become Association Visitors, and being unable to do so leaves us at risk of not being able to help those living with MND on the island.
The most inspiring success story I’ve witnessed through our work is…
Being successful in our campaigning of the Government in 2023 for them to fully fund a dedicated MND nurse on the island. This role provides much-needed and instant support at home to people living with MND, keeping them out of hospital and in the comfort of their home with their families. The peace of mind the nurse offers to these patients daily is immeasurable.
In five years, I hope our charity will…
Not exist!! While this is unfortunately very unlikely, our continued hope is that we will one day live in a world free of MND when a cure is found. While the majority of funds we raise on the island stays on the island to help those living with MND here, we do contribute an amount annually towards research, in the hope of finding a cure from this cruel disease.
The most important quality in a team is…
Having a common goal. I have always thought that a committee is not an ideal structure for running an entity such as a charity, because at times varying opinions among members can cause conflict and disagreement. However, from our perspective, pulling together a group of people whose only aim is to help those living with MND in Jersey makes decision-making significantly easier. All of our committee have been closely affected by the disease following the passing of a loved one, and that allows their real passion to flourish, so they can make a difference and learn from their own experiences.
When it comes to motivating people, I believe…
Being thankful and appreciative for someone’s efforts is a real motivating force. Our charity is run solely by volunteers, a number of whom have full-time day jobs, and so for them to give their time to help others on the island is inspiring. By acknowledging their contribution, however small, I believe it leads them to be recognised for their efforts, fulfilled, and willing to contribute more in the future.
A mistake I made early in my leadership journey was and what it taught me was…
Underestimating the time involved in running and leading a charity. Having a full-time job and a young family means my free time is limited, and so to be able to help those with MND fully and to a high standard has been difficult at times. However, understanding that by surrounding myself with the right people with a common aim, and being able to delegate appropriately, means we have been able to achieve our goals.
If I could change one thing about how charities are run, it would be…
Reducing the administrative burden for many of the smaller charities on the island. With nearly 500 registered charities in Jersey, I am aware that there have been calls to try and consolidate many of those with similar objectives. However, my opinion is that rather than try and consolidate charities, perhaps establishing a shared resource to provide assistance with many of the administrative tasks that are required through the year, which take so much time and understanding for each charity. This would allow those people running each charity more time to follow their individual visions, rather than be lost if subsumed into a larger organisation.
The most unexpected thing about working in the charity sector is…
The support it provides someone when working towards a shared cause. Having lost my mother to MND 15 years ago, to then be connected to others who have lost loved ones in such a cruel fashion, has been very therapeutic. The pain of my mother’s death in such an undignified way still remains very raw for me, and so being drawn together with people who have had similar experiences, with the sole aim of helping others, has been uplifting.
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