Dystonia Awareness Week – 3rd-11th May

 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,…

International Wheelchair Day

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…

Rare Disease Day 2022!

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

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…

Good Care Week

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

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…

Feeding Tube Awareness 2022

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…

Welcome Robyn to the LN Team!

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…

Laura’s Cycle Challenge

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…

2021

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…