Charity Run
We have a dedicated team working to help us achieve our mission and support our Leigh Network families. This currently includes:
Mandy Wylie
Trustee
I have been with Leigh Network from the very start and watched it flourish from the first meeting with families to now raising funds for vital research into this devastating disease. My role in Leigh Network is to emotionally support families. And to help with the running of Leigh Network. I enjoy being a part of a family who are all going through similar situations.
Sophie Thompson
Trustee
Having known and worked with Faye for years and seeing her passion and drive to support families in a similar position to her own, I was delighted to formally join Leigh Network in 2019. Together, we have achieved registered charity status and expanded Faye’s reach on social media around the world. I can’t wait to see what this inspirational woman does next- and Mito Families will be at the heart of it as Faye is extremely dedicated to Leigh Network.
Sarah Bradshaw
Trustee
I met Faye through a mutual interest in poetry. As soon as Faye told me about the work she had been doing with Leigh Network I wanted to be involved in some way. It’s been brilliant to be a volunteer and to be able to help out with some of the fundraising activities and be on the journey with the team to support the fantastic work that Leigh Network does.
Erin Wilkinson
Trustee
I met Faye through our other Leigh Network trustee, Sarah. Over the years, I have teamed up with Sarah to support Leigh Network through some fabulous fundraising ideas and felt honoured to be asked to become a trustee for this amazing charity. I have learned so much along the way about mitochondrial disease and how it affects those families whose lives are forever changed by it. I very much look forward to raising awareness and funds for Leigh Network and supporting all those involved in any way that I can.
Mandy Wylie
Trustee
I have been with Leigh Network from the very start and watched it flourish from the first meeting with families to now raising funds for vital research into this devastating disease. My role in Leigh Network is to emotionally support families. And to help with the running of Leigh Network. I enjoy being a part of a family who are all going through similar situations.
Sophie Thompson
Trustee
Having known and worked with Faye for years and seeing her passion and drive to support families in a similar position to her own, I was delighted to formally join Leigh Network in 2019. Together, we have achieved registered charity status and expanded Faye’s reach on social media around the world. I can’t wait to see what this inspirational woman does next- and Mito Families will be at the heart of it as Faye is extremely dedicated to Leigh Network.
Sarah Bradshaw
Trustee
I met Faye through a mutual interest in poetry. As soon as Faye told me about the work she had been doing with Leigh Network I wanted to be involved in some way. It’s been brilliant to be a volunteer and to be able to help out with some of the fundraising activities and be on the journey with the team to support the fantastic work that Leigh Network does.
Erin Wilkinson
Trustee
I met Faye through our other Leigh Network trustee, Sarah. Over the years, I have teamed up with Sarah to support Leigh Network through some fabulous fundraising ideas and felt honoured to be asked to become a trustee for this amazing charity. I have learned so much along the way about mitochondrial disease and how it affects those families whose lives are forever changed by it. I very much look forward to raising awareness and funds for Leigh Network and supporting all those involved in any way that I can.
Faye’s diagnosed Mitochondrial Disease is
called Leigh Disease.
What is Leigh Disease?
Leigh Disease (aka Leigh Syndrome or Leigh’s) is a common mitochondrial disease- affecting 1 in 30,000. It is a severe neurological condition often affecting areas of the brain controlling movement and muscles throughout the body, and can affect mental stamina and cognitive ability. Although Leigh’s primarily affects young children, symptoms can begin in teenage years or even later.
What is the prognosis for a Leigh Disease patient?
Whilst Leigh Disease may be fatal in some very rare genetic variants, there are many patients who survive to adulthood and lead a good quality life. It is correct that there is no specific cure for Leigh Disease in general. However, there are some treatments that can help with the symptoms experienced by children, adolescents and adults with this and other mitochondrial diseases.
Mitochondrial disease has no cure and few treatments… this is why it is so important to raise public awareness and to raise funds for research.
Don’t blame yourself
There is a maze of complicated biological reasons why each individual person is affected in such a unique and specific way. Any parent may feel guilt or responsible for their child’s illness and the person who has the illness may feel guilty for the stress that Mitochondrial disease brings a family. But please don’t. It is nobody’s fault, it is simply the lottery of life. It is important to keep links with family and friends as it can be a very isolating illness.
You are unique so your coping mechanisms will be too
There is no rule book on how to deal with a diagnosis as no two people are the same. Some coping mechanisms may be to utilise hobbies, interests and therapeutic activities. These may help you to adjust to a new situation.
Find a way to deal with the past so you can enjoy the future
Many find anniversaries to be particularly tough, whether of a birthday, death, diagnosis or another significant day. There is no right or wrong way to express your grief, but for example if it is a death, you may find that doing something special on the day to remember the person can help you to feel some peace, by remembering the good times and happy memories. Maybe lighting a candle for some people offers time for reflection. Sharing positive memories with loved ones, is a good way to keep memories alive without focussing on what you have lost.