Mitochondrial Disease affects around 6,000 adults and children in the UK, however most of us have not even heard of it. As a rare disease there is very little awareness, yet it has a major impact on families with sometimes devastating consequences.
Mitochondria are required to produce the energy that powers our cells, therefore vital for all the major organs of our body to function properly.
Our Scientists at Newcastle University are working very hard to find solutions that will make a major difference to the lives of patients and families affected by mitochondrial disease.
Thank you to all of our supporters as every donation made to the Mitochondrial Research Fund is greatly appreciated by the team. Your gifts are vital and will fund essential research to develop technologies that will help us to tackle mitochondrial disorders and provide better care for patients who have mitochondrial disease. To read some of our supporters fundraising stories, please click on the link below.
This year to raise money for mitochondrial research I took part in The Edinburgh Night Cycle, this was a 48 mile cycle taking in the wonderful sights of Edinburgh. The cycle began at 8.30pm in the evening and began with a steep climb up Arthurs Seat where the views from the top were spectacular. As well as Arthurs Seat, we took in some incredible and iconic sights of Edinburgh – Holyrood Palace, Scottish Parliament Buildings, The Castle, The Forth bridges, to name but a few.
After covering the 48 miles I finished my challenge at 1.50am in the morning, pedalling triumphantly but absolutely knackered, over the finish line. It was a massive achievement for me as I have never cycled this far before, nor have I cycled in the dead of night before, but I absolutely loved it and most importantly I raised just over £600 for Newcastle University Research. And I am hoping that this will help to raise awareness and help to find a cure to not only help my dear friend Susan but to also help everyone else who has mitochondrial myopathy.
Gayle’s is also doing another 50 mile cycle on 6th September – Pedal for Scotland and if anyone would like to donate her just giving page is www.justgiving.com/Gayle-Williamson14
Betsy’s Fund for Mitochondrial Disease Awareness
On the 6th March 2014, we were blessed with a beautiful little girl. Betsy weighed a healthy 9lbs 10ozs at birth and showed no signs of any problems.
However, when Betsy was just eight weeks old, we realised something wasn’t quite right. After a fraught few weeks we were told that she has a Mitochondrial disorder which presented itself in Betsy failing to thrive, thickened heart muscle and high amounts of acid in her blood. As she is currently under investigation, we still don’t know how this condition will affect her health or life expectancy.
According to recent research about 1 in 200 people carry a mitochondrial genetic defect. Not all of these people will go on to develop the illness. The real risk of developing or being born with this condition is around 1 in 5000. There is currently no cure, only methods to manage the different symptoms. We would like to raise awareness and funding for research in order to beat this condition, so that no more families have to endure what we are going through.
English afternoon tea to celebrate Ted French
My husband Gareth and I have a 3 year old daughter Penny and we had a baby boy, Ted, in November 2012. He was perfect and brought us so much happiness, completing our little family. After a few months of newborn bliss we were devastated to find out that Ted had a mitochondrial disease. We all remained positive and spent our every moment with our wonderful baby boy when he was in and out of hospital but sadly we lost him when he was 5 and a half months.
Our aim now is to focus on something positive by raising money for the Mitochondrial Research Fund and help to raise awareness of mitochondrial disease.
Newcastle university are still carrying out genetic investigations into Teds muscle biopsy. We hope that their findings may go on to help others in the future and so we feel it is important for us to help raise money towards the research.
We started up a justgiving page (justgiving.com/Ted-French) after Ted passed away so that our friends and family could make donations. Their generosity helped us to raise over a £1000. On July 20th we held a vintage bake sale, it was a fantastic day and we raised £1005! We were completely amazed at how well we did and feel so overwhelmed at the amazing turnout and generosity of everyone! We had a queue out of the door and we almost sold out of everything. All the kids had face paints and everyone enjoyed the delicious cakes and tea in the lovely vintage china. And we had some great raffle prizes donated to us too!
Our wonderful family and friends have supported us throughout everything and have helped us to raise so much money! Our total on the justgiving page currently stands at £2215 but will hopefully continue to grow as we carry on our fundraising. We would like to hold similar events in the future and we plan to
run 10k next May.
We hope that Newcastle University mitochondrial research fund is pleased with our fundraising. We are doing it in memory of our beautiful baby boy Ted and hope that we are making him proud!
Written by Dee French, 22 July 2013
The Lily foundation
The Lily Foundation is a UK charity funding medical research into mitochondrial disease. The charity also raises awareness of mitochondrial disease and supports affected families. The following video was created to simply and visually explain how important mitochondria are, and what happens when they go wrong. The video will be used nationally to help educate and raise awareness of mitochondrial disease.
To watch the video click on the play icon.