Research we are supporting…

Leigh network is proud to support the ground-breaking mitochondrial research happening in Newcastle University.

Over the years we have contributed to the vital research at Newcastle. In February 2020, we were delighted to donate a cheque of £2000 to their mitochondrial scientific team. The donation – fundraised by our fabulous supporters – will go towards a Leigh Disease research Project headed by Professor Robert McFarland, the chief investigator and lead of the study. Dr. Albert Lim, Professor Grainne Gorman, Professor Robert Taylor and many team members help to run the project.

What the project involves: …

The group will be examining how the disease progresses during the study period.

By monitoring the similarities and differences between the 80 variants of this complex mitochondrial disease, it can be better understood how to treat patients of the future and develop more refined treatments.

What age group will the project be monitoring?

They are going to be inviting children up to the age of 18 years old at the moment. There may be opportunities to extend this to young adults in the future.

What does taking part involve?

If a child (and his/her parents) decide to take part, they will be asked to go to Newcastle for three visits. These will be 3 months apart and take place in the same locations as the usual clinic appointment with the NHS Highly Specialised Service for Rare Mitochondrial Disorders. Each visit will last for about 2 hours (including the routine NHS clinic appointment with a consultant or specialist doctor). During these visits, they may ask the child to do some activities. There is also a questionnaire for the parents.

How are patients chosen?

They will be inviting children and their parents to participate if they meet the study requirements. Invited children and parents

are free to decide whether to take part or not. Parents of children with Leigh Syndrome can also contact Newcastle University directly if they wish to participate.

The study will be open for 12-18 months. This project is a collaborative effort supported by LSIC (which was launched in September 2019 with the aim of advancing scientific research specifically related to Leigh Syndrome). The founding members include The Lily Foundation (UK), Mito Foundation (Australia), Mitocon Onlus (Italy), People Against Leigh Syndrome (USA) and the United Mitochondrial Disease Foundation (USA). The LSIC has pledged a total of $1 million USD (£770,000 GBP) to six projects which aim to improve diagnosis, treatments and clinical care for Leigh’s patients.

This research project can only happen with the kind generosity from people like you, our fabulous supporters. We at Leigh Network would like to thank each and every one of you who has donated. You are changing lives. It is only through research that viable treatments can be found. To help us continue to be able to contribute to the vital research at Newcastle, please donate here;www.gofundme.com/f/zuvrp-leigh-network-family-mito-meetings

Correct as of August 2020

To help us continue to be able to contribute to the vital research at Newcastle, please donate here;
www.gofundme.com/f/zuvrp-leigh-network-family-mito-meetings