We had a brilliant day at Hulme Hall Flea Market on Sunday 3rd March! We had lots of lovely chats with people about mitochondrial disease, lots of laughs and we raised a whopping £200! Awesome! Thank you to everyone who donated items and to all the fab customers – you all rock! 🙌🏻😊💚❤️🥳 #MitoAware #MitochondrialDisease…

A fantastic way to raise awareness of mitochondrial disease and Leigh Network is to wear one of our gorgeous wristbands and badges! For only £1 each (+p&p UK only) you can get the conversation about mitochondria going! Why not order a bundle and give them to your friends, family or sell them at your workplace?…

What a year 2023 has been for Leigh Network! A round up from Faye; Year Round Up 2023 Video In January Mandy continued to walk on during the winter weather, towards completing her 1000 Mile Walk in memory of our Sammy. During February, Glasgow Rare Aware which is medical students from Glasgow University, asked us…

When we were at the Newcastle patient information day, we listened to Dr Albert Lim and Professor Bobby McFarland discussing their Leigh Syndrome research project which began by looking into how the disease affects children and progresses in its younger sufferers.Over the last few years Leigh Network have been contributing to the project and were…

On Sunday 3rd December 2023 a wonderful team of volunteers/trustees supported Leigh Network by running the Liverpool Santa Dash! Thank you to Sarah, Erin, Claire, Gaynor, Tiff, Kat and Oliver! ❤️ A huge thank you also to every individual who so generously sponsored our fantastic santas! Your kindness raised an amazing £520.00, this will go…

We were delighted to be invited by the Newcastle Research Team to attend the Patient Day in Newcastle on Saturday 14th October 2023.  It really was a fantastic day which involved so many different wonderful organisations, doctors, patients and Liz Twist MP.  It was a great opportunity to see old friends and meet new people…

  Leigh Network was proud to take part in World Mitochondrial Disease Awareness Week between 18th-24th September 2023! Each year we join Mito organisations from across the globe in an amazing effort to raise awareness about Mitochondrial Diseases, the impact they have on patients and their families and the need for vital research to find…

  A huge thank you to everyone who sponsored Mandy on her 1000 mile walk in memory of Sam who lost his life to mitochondrial disease 30 years ago, aged just 19 months. We can now announce that your generosity helped Mandy raise a fantastic £1815.00. THANK YOU YOU ARE CHANGING LIVES To celebrate Mandy…

We had a fabulous time on Saturday 15th July at our Leigh Network Family Day at the Newcastle Life Science Centre. Thank you to everyone who came along and to Dr Lyndsey Butterworth and Dr Albert Lim from Mitochondrial Research for an insightful talk together with a Q&A session and activities. As always it was…

Over the last few months we have been supporting many different awareness campaigns. So many different conditions have been shown to have mitochondria dysfunction and highlights the fact that research into mitochondrial diseases will not only benefit those diagnosed with the condition but millions of others.  If you visit our social media pages on Facebook,…

Over the last few months we have been busy raising awareness about mitochondrial diseases and about the support that Leigh Network offers.  We have been lucky enough to hold awareness days at Tesco in Heswall and  Asda in Liscard, we had some fantastic chats with the customers, gave out lots of our leaflet and raised…

Kai & Nadiya Our founder Faye and her mum Mandy were lucky to meet some of the amazing dancing stars from Strictly Come Dancing, with Kai and Nadiya sending Leigh Network a fantastic message of support! Faye and Mandy raise awareness about mitochondrial disease wherever they go – even when they’re dancing 🙂    …

A huge thank you to all our supporters who have helped us raise funds over the last year, because of this support we were recently able to donate £2,200 to The Wellcome Trust Centre in Newcastle who carry out vital research into mitochondrial diseases.  We were so pleased to receive a thank you letter from…

We were extremely proud to join the international mitochondrial community during Rare Disease Day to not only support raising awareness about all rare diseases but also about the significant contribution that research into and understanding mitochondria does and can have on the whole rare community.  We were able to take part in a tweet storm…

What a year 2022 has been! A round up from Faye: We began the year with Laura Jakubowski completing her fundraising challenge. A sit down cycle which was amazing and raised much needed funds for Leigh Network. Laura sadly lost her fight to mitochondrial disease in July. She is so missed ❤️ Robyn a student…

Katie Maj, who herself has mitochondrial disease, causing dystonia, mobility and balance issues, among other things, has just had her milestone birthday of 21 so decided to celebrate by taking on a mammoth challenge of exercise. Throughout the whole of October Katie has been pushing herself to her limits, swimming, trampolining, cycling, boxing, stretching, walking…

💚🙌🏻 We had a fab day at Hulme Hall in Port Sunlight on Sunday 2nd October! We raised a whopping £163! We’re so grateful to everyone who donated items, for those who bought from us, and it was great chatting to some lovely people about who Leigh Network are and why awareness about Mitochondrial disease…

Mandy explains why she has set herself a new challenge to raise funds for Leigh Network, which she started during Mitochondrial Awareness Week. Click on the video to find out more and the link to donate is below. Everyone at Leigh Network is supporting Mandy with this fantastic fundraising initiative and we hope you will…

    All this week we were posting all over our social media accounts to raise awareness of mitochondrial disease. Visit our Facebook, Instagram and Twitter accounts to see all the posts and find out more.   We were so grateful to some of our Leigh Network family for sharing their thoughts about what mito…

What an amazing and humbling weekend we had at the first ever Leigh Network weekend for mitochondrial adults. On 12-14 August 2022. It made all the hard work worth every minute. A huge thank you to our mito warriors, parents and carers who came along. We also raised a glass to our good friend Laura…

Loneliness Awareness Week 13th-17th June During Loneliness Awareness Week we shared information on our social media platforms and introduced out followers to a charity called The Marmalade Trust who started the campaign in 2017. We at Leigh Network know the impact of feeling alone or lonely and this was part of the reason for Leigh…

During June Leigh Network supported Diabetes Awareness Week through sharing useful information about diabetes on our social media platforms. Some people affected by mitochondrial disease may also have the added challenge of managing diabetes. Knowledge is power and we know the importance of raising awareness about conditions like diabetes. There’s lots of information available on…

At the start of June we celebrated carers everywhere. Carers play such an important role in the lives of those with mitochondrial disease. We asked one of our families, Lisa, about their caring role. Here’s what Lisa said, “Being a full time carer for my daughter Lucy is hard work, she can’t do anything for…

 Dystonia is a neurological movement disorder that causes uncontrollable muscle spasms which can be extremely painful for some. Dystonia is estimated to affect 100,000 people in the UK, and there is no cure. To recognise Dystonia Awareness Week 2022, we asked friends of Leigh Network to share their stories. Faye’s Story: “To look at me,…

See the PERSON, NOT the wheelchair. This International Wheelchair Day, let’s raise awareness of wheelchair users! Faye has a blog called Access Champion where she shares her experiences at various venues and discusses their wheelchair accessibleness. Give it a read and share with us your experiences of being a wheelchair user! Get in touch via…

IT’S RARE DISEASE DAY!💛🦠💊 Our founder, Faye, shares her experience of living with a rare disease. It can be a constant battle, one that makes you feel alone as you constantly have to prove that your life is worth it. Although, one of the positives of the Rare Community is the love and support everyone…

Random Act of Kindness Day 2022❤️ A day celebrated across the world where people are encouraged to make a ‘ random act of kindness,’ here are some ideas for you: – Smile at a stranger – Pay someone a compliment – Give up your seat for someone on the bus – Tell someone you love…

This week it’s good care week. We asked our families what impact their carer/PA has on their life and Laura has shared hers: Hi my name is Laura I am 36 and have a rare condition called mitochondrial disease RRM2B.   It effects my muscle’s, respitory system, hearing and swallowing, and I suffer with fatigue.…

Tinnitus Awareness Week – 7th-13th February 2022 Commonly known as ringing in the ear of a person. Tinnitus can sound like ringing, buzzing, whooshing, humming, hissing, throbbing, music or singing. These sounds can be heard in 1 or both ears, or in your head ‍‍‍ Tinnitus affects 1 in 8 people in the UK Tinnitus…

In February it is Feeding Tube Awareness Week. Feeding tubes are a great way to get vitamins, nutrients, and medicine into a person who may have a low appetite and a shortage of Mitochondrial energy to digest food. Donna has kindly shared her son Harry’s story: I was so apprehensive to go down the feeding…

Leigh Network would like to welcome Robyn to the team! She is a student from Manchester Metropolitan University who for the next few months will be taking over our social media channels.   Upon joining the team Robyn said: “I am so excited to support Leigh Network and create some fun and engaging content for…

Mito warrior Laura Jakubowski aged 36 who has RRN2B took on her own new year challenge – a sit down cycle challenge! Laura peddled EVERYDAY throughout January.   This was extremely tiring for Laura which makes the whole challenge even more inspiring.   Leigh Network is so thankful to Laura, who also managed to raise…

What a year it has been!  There have been ups and downs, lots of happy and sad times and most definitely memories made! We have had so many brilliant zoom calls where we have caught up with friends old and new! We have supported each other through the 3rd lockdown due to covid. We have…

Around the world mitochondrial disease research is taking place. We’ve been honoured to take part in Leigh syndrome discussions with doctors and mito professionals from around the globe. It was truly inspiring to hear their passion and energy about Mito and their patients. Leigh network is proud to support the Newcastle welcome trust Leigh syndrome…

This is the medication I take everyday, 20 of these tablets are taken in the morning and I tend to choke on them with juice so I have them now with a thickened drink. The mito cocktail is a cocktail is a mixture of vitamins, pain relief medication and any symptom management. It is tailored…

IMG_0588

What is mitochondrial disease?FullSizeRender

IMG_0629 I did it! 🤩 I who have mitochondrial disease, encompassing: fatigue, muscle weakness, dystonia, aphasia, blindness and no treatments, completed a 5k bike ride! 🚴 I never thought achieving something like this would be possible but with the support of wheels for all, it was. On about lap 8, my muscles were starting to…

A huge thank you to our wonderful family who took the time to take part in our share your smile week. We are sire your beautiful smiles made everyone who saw them radiate their own smile too.   #shareyoursmile #mitoaware #LeighNetwork #mitowarrior   Www.leighnetwork.org.uk Www.gofundme.com/zuvrp-leigh-network-family-mito-meetings

Today we meet Susan an adult living with mitochondrial disease 💚Here are some things which make me smile…..my daughter Emily, movie nights, spending time with family and friends, being outside in the sun, laying on a beach listening to the sound of the waves and doing fun exhilarating things like the zip wire at the…

Today we meet Abel, who has Mito. Swimming makes Abel smile. Abels parents run the Abel Foundation https://www.theabelfoundation.org.uk/ Abel definitely loves the water, going in the pool gives him freedom to move and helps relax him 🥰🤩 It’s great we can go on this journey together…..☺   #mito #shareyoursmile #mitoaware #leighnetwork   https://uk.gofundme.com/f/zuvrp-leigh-network-family-mito-meetings   Www.leighnetwork.org.uk

This is James who has Leigh’s   Here are some photos of James and what makes him smile – Douglas, Star Wars and food 😂😂   #mitowarrior #shareyoursmile #mitoaware #leighnetwork   Www.leighnetwork.org.uk   https://uk.gofundme.com/f/zuvrp-leigh-network-family-mito-meetings

Meet Harriet – Harriet is 2 1/2. She is happiest when she is singing, dancing, eating chocolate or cuddling her sister!   #leighnetwork #mitoaware #shareyoursmile #mitowarrior   Www.leighnetwork.org.uk   https://uk.gofundme.com/f/zuvrp-leigh-network-family-mito-meetings

Today meet Katie. She has Leigh’s Katie is now 19yrs old and will have a go at anything! Nothing scares her and has done abseiling indoor wall climbing death swing(!) and has even water skied !! She never lets anything get her down ! She loved her brother Dan who we sadly lost 7yrs ago…

We at Leigh Network are always humbled by how, despite the struggles our familiies face – from being heard and treated with respect, to Hospital stays and coping with what life and mito throws at them, our brave mito families still smile, proving what tough, inspiring warriors we truly are. We thought we’d start Share…

As the take a chance challenge comes to a close, I’d like to reflect… when I began doing the fitness and fun video classes alongside the neuromuscular centre ones, it was exhausting! My muscles ached and I wondered if I could do this for the next 6 weeks. But I carried on. I have noticed…

Throughout the whole of March Leigh Network and our supporters have been taking part of the take a chance challenge, Check out Faye and Mandy’s radio interview on BBC Radio Merseyside from yesterday if you missed it. Its around 1 hour 40 minutes in to the show 💚 https://www.bbc.co.uk/sounds/play/p0991sbw

Physical health has a massive impact on our mental health and emotional wellbeing.This week, Bryn invited special guest speaker, Kate, from the Motherwell charity that supports women and girls struggling with their mental health.Kate shared her 5-step plan for keeping your mind (and in turn, body) positive as it floats along the sea of life.C…

  As part of my own challenge, I will take a chance on fitness. This past week, I’ve been taking part in Fitness and Fun. These daily exercises are good, especially for people with limited mobility. What is enjoyable about these fast-paced routines, is you can do it as slowly or speedily as you like.…

We thought we’d give you a cheeky taster of the challenges others are taking a chance on to tantalise your tastebuds…   Hi, I am Fayes mum, Mandy. As part of my Take a Chance Challenge, I have given up alcohol. Usually, i enjoy glass of presseco or 2 with dinner, so have replaced it with…

Take a Chance for Leigh Network Challenge.When my cousin, 17 year old Isaac Kneen, announced he’d take on the challenge of running a mile an hour for 24-hours, I was so overwhelmed, I almost cried. I could hardly believe it. From the minute he started his challenge the donations began to come in. I was…

Lead by Bryn, focussing on self-management.   After  a brief recap of the previous sessions, the first half focused on goal-setting and how having an aim to work towards is a great motivation.   Self management of physical activity recommendations   Aerobic  Strength  Balance  Flexibility  Setting goals  Assessments  See where you are  Motivation  Tracking / monitor  Be specific –…

Session 2 of the Neuromuscular centre course was with Paul, the  clinical lead physio from the centre.   In Paul’s session, he discussed the benefits of exercise being:    Improved cardiovascular and muscular fitness,  but stressed the importance of speaking to your Dr. especially if you have any health – issues  -heart/lung  issues  before engaging in any new exercise regime  or  changing…

Another course I’ve been doing is the Seeing Sound project – a collaboration between the brain charity’s aphasia group and the British library. Aphasia is when your brain messages don’t reach your vocal chords/speech muscles,have trouble recalling words. It most commonly occurs after a stroke but some neurological conditions, like mitochondrial disease, can be affected…

I began this not knowing what to expect, but was intrigued to learn. The first session saw Bryn, a physiotherapist from the NMC, explaining how the body reacts internally depending on the level of intensity of the physical activity. He told us how exercise, e.g participating in an organised (zoom) class can be more beneficial…

At the end of every year, we like to do a little yearly round up of our events and achievements, and this year is no different… 2020 sure has been a strange year – we’ve all had to adjust, make sacrifices and learn to live through a global pandemic. We had so much planned for…

We at Leigh Network are delighted to hold our annual mito family days, which we fundraise for throughout the year. These are a wonderful opportunity for our amazing mito warriors and their families to meet, share experiences and learn from each other, as well as the specialist Drs. and researchers who often give talks. Our…

Throughout the pandemic, we have been running a virtual art exhibition on our social media pages. This is a celebration to show how creative our mito families have been and continue to bravely endure the lockdown period. This is to showcase mitochondrial disease in a positive light and to highlight the abilities people with mitochondrial…

At the start of lockdown Faye set herself a challenge to pedal 10 hours across 5 days 2 hours a day, to raise funds for Leigh Network. Although 2 hours a day may not sound much to a healthy person, to someone with mitochondrial disease who has dystonia, fatigue and mobility problems this was a…