Project PEARL: raising the profile of mitochondrial disease
As part of our patient-driven approach to everything we do in the Wellcome Centre for Mitochondrial Research, we are committed to increasing awareness of mitochondrial disease to transform the lives of those living with the condition. This includes raising the profile of mitochondrial disease with politicians to ensure the best care, support and treatment for all patients and families across the UK. To help achieve this, we are asking you to share your experience of mitochondrial disease with your local MP and ask them to attend a parliamentary drop in session in collaboration with the APPG on Rare, Genetic and Undiagnosed Conditions (date to be confirmed).
Professor Gráinne Gorman and colleagues in the WCMR at Newcastle University are working on a visionary campaign called Project PEARL that aims to increase the profile of mitochondrial disease for the benefit of the entire mitochondrial community. Part of this campaign includes raising awareness of mitochondrial disease with politicians to help secure vital funding needed to continue world-class mitochondrial research that provides hope for a cure.
We need your help to make sure politicians know the seriousness of mitochondrial diseases and the impact they have on patients and families.
Your view is important and unique – and politicians need to know how they can make a difference for affected patients and families. They need your help to understand how low awareness of mitochondrial disease can impact your daily life and personal experiences/examples are important in this. If lots of people share a particular view or concern, it will help politicians recognise the problem faced by many living with mitochondrial disease.
You could write a letter, email, telephone, or ask to speak with your local MP at their surgery. Tell them what you think about awareness of mitochondrial disease and what it means for you and your family. Please share your personal experiences of mitochondrial diseases if you feel comfortable.
What should I say?
When writing to your MP, you can say anything you want. Personal examples, stories and even pictures can be very powerful in helping you make your point.
Top tips for contacting your MP:
Say who you are, e.g. “I am a patient/parent/relative/friend …”
Keep it as short as possible; less is definitely more. Make it clear to read and write in plain English.
Explain the issues you face and use evidence where possible, including real life examples or personal experiences.
Decide on your main message and make sure this comes across clearly. This could include why raising awareness of mitochondrial disease is important to you and need for research funding.
If you want to write but you’re not sure what to say, you could write your letter with friends or family.
Always include your postcode. You can contact other MPs from outside your constituency but you must be clear about why you are contacting them.