Pulmonary Fibrosis Trust

As part of Pulmonary Fibrosis Awareness Month we are delighted to share with you our Charity Spotlight Series interview with the Chairman of the Pulmonary Fibrosis Trust, Peter Bryce. Peter discusses the work that the Trust undertakes to support the PF community and the challenges they face being solely reliant on volunteers to run the organisation.

The aim of the Pulmonary Fibrosis Trust is to provide personal support to people affected by Pulmonary Fibrosis, a very debilitating and life-limiting illness. The Trust offers practical, emotional, and financial support where there is a need. They also raise awareness of the illness and in particular the challenges people face on a daily basis.

A massive thank you to Peter for taking the time to discuss the Trust with us and for educating us on the realities of living with a rare lung condition.

Did you know?

  • The most common symptoms of Pulmonary Fibrosis are dry, persistent cough and shortness of breath.
  • Men are nearly twice as likely as women to suffer from Idiopathic Pulmonary Fibrosis (IPF).
  • More than 30,000 people are living with IPF in the UK.
  • Without treatment, 50% of IPF sufferers will die within 3 years of diagnosis. Treatment extends life expectancy to 7-8 years.

*Stats from Breathing Matters

To find out more about the Pulmonary Fibrosis Trust and how you can support the work they do, please visit their website: https://pulmonaryfibrosistrust.org

Metabolic Support UK

The third episode of our Charity Spotlight Series sees our Marketing Manager Georgia Rose interview Jess Doyle, the Head of Service Delivery at Metabolic Support UK. Metabolic Support UK provide practical advice and patient-friendly information to patients and their families from diagnosis and beyond, whilst helping patients navigate through complex pathways of support and treatment, as well as offering support in times of difficulty.

Since launching 40 years ago, the charity’s reputation has spread from the UK to Europe and beyond, becoming part of a worldwide collaborative network.

Jess joins us to discuss the charity’s ten-year strategy that has just launched, their 40th anniversary plans which are taking place this year, their experience with clinical research and how they have navigated their way through the past year.

To find out more about Metabolic Support UK and how you can support the work they do please visit their website: https://www.metabolicsupportuk.org

For information, support or just a chat please call the Metabolic Support UK team on their Freephone helpline: 0800 652 3181 (Monday-Friday 10am-4pm).

The Lily Foundation

The second episode of our Charity Spotlight Series sees our Marketing Manager, Georgia Rose interview Liz Curtis the CEO and Founder of The Lily Foundation. The Lily Foundation is the UK's leading Mitochondrial Disease charity, run by a small team of dedicated staff and backed by a medical board, providing a vital link between patients, doctors and medical science bodies.

The interview covers a range of topics including how the charity was founded, the incredible work they do supporting the Mitochondrial Disease community, the clinical research space, the experience of patients in trials settings and the impact this has on patient retention.

Finally the conversation leads onto the impact of the pandemic and how the charity has had to adapt in order to stay afloat during such a challenging year.

You can learn more about The Lily Foundation and how to support them by visiting their website https://www.thelilyfoundation.org.uk

For regular updates you can follow the charity on social media: "Twitter: @4Lilyfoundation" "Facebook: @lilyfoundationuk" "Instagram: @thelilyfoundation"

Rett UK

The first episode of our Charity Spotlight Series sees our Marketing Manager, Georgia Rose talking with Becky Jenner the then CEO of Rett UK. Rett UK is the only UK charity which provides professional support to people living with Rett Syndrome across the UK.

Becky discusses the year Rett UK has had and the many challenges they have had to overcome in order to deliver their vital services to the families they support.

You can learn more about Rett UK and how to get involved with supporting the charity by visiting https://www.rettuk.org