Spreading the word on the Foundation’s work - News - The Lily Foundation
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Spreading the word on the Foundation’s work

Research Awareness

26 January 2023

Head of Research & Finance Alison and Science & Patient Engagement Officer Katie are delighted to be attending the British Paediatric Neurology Association’s 49th Annual Scientific Meeting at The Royal College of Physicians of Edinburgh from 25th-27th January 2023.

A member of the Lily Foundation team stands beside an awareness stand for the charity A member of Lily Foundation staff stands behind an information stand covered with leaflets

The BPNA meeting is always an excellent opportunity to spread the word about The Lily Foundation’s work fighting mitochondrial disease amongst paediatric neurologists and trainees, giving us the chance to speak to professionals and distribute leaflets and other patient materials for doctors to share with their patients in their clinics.

The conference also provides an opportunity for the team to meet with other charities working within the field, sharing progress and strengthening links to offer support to patients and families living with neurological conditions all across the UK.

Not only are the Lily team thrilled to have been selected as one of only eight charity exhibitors offered the chance to host a physical stand at the conference, but we’re also delighted to announce that, for the very first time, The Lily Foundation will be displaying an academic poster at a medical conference. This is the first time the BPNA have offered charities the chance to display their work at the event, and we believe this signifies a growing appreciation of the important role patient charities play in strengthening the patient voice across care and research.

The Lily Foundation poster is based on the impact of our annual Lily Family Support Weekend. Entitled ‘“The one place we can be ourselves” - Assessing the Impact of the Lily Family Weekend on Families Affected by Mitochondrial Disease’, the poster showcases the work that The Lily Foundation do in offering support to families, a key part of our mission as a charity. Our poster outlines the objectives of the annual Family Weekend in terms of providing emotional support to families, delivering a safe and inclusive space for families to spend time together, and giving the opportunity for parents and carers to meet the UK’s leading mitochondrial disease experts, as well as delivering a programme of fun and inclusive activities for affected children and their siblings.

Developing our poster offered us an opportunity to step back and consider the impact of the annual event, as well as giving us the chance to share the positive feedback provided by families following the most recent Family Weekend.

Following the initial selection of our poster, we were delighted to find out that we had been further shortlisted by the BPNA research committee as the only charity to deliver an oral poster presentation during the Friday afternoon session. This is an amazing opportunity for the Lily team to speak directly to around 400 Consultant Paediatric Neurologists, Paediatricians, Neurodisability Consultants, trainees and nurses about the value of the Lily Family Weekend, as well as providing a forum to raise general awareness of the work that The Lily Foundation does to support families living with a mitochondrial disease diagnosis across the UK.

We hope that by hearing our presentation and viewing our poster, this will help professionals to become more aware of mitochondrial disorders and spread the news of our work amongst the patients and families that they care for. In addition to this, our poster presentation abstract will also appear in the medical journal ‘Developmental Medicine and Child Neurology’, providing yet another opportunity for us to have our work shared even more widely amongst the medical community.

You can find a full overview of the poster presentation here.

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