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…
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…
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…