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…
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…