North West Lupus Group

Sammy Ainsworth (Clitheroe)

Position: Committee Member
Hi, my name is Sammy Ainsworth and I have been a committee member for three years. In 2018, I also became a trustee of Lupus UK.

I live with my husband Bill, two children Jack and Sophie and much loved golden retriever Rosie near Clitheroe in Lancashire.  I am originally from Camden in London.  I still go back to visit family often but I have loved living in the North West for over 25 years.

Just over 5 years ago my daughter Sophie was diagnosed with Lupus when she 14 at Alder Hey hospital. She had been ill for nearly six months and although her diagnosis was upsetting, we were relieved to finally realise what we were dealing with and learn slowly how to help her.

After a few months I reached out to the charity and our involvement as a family began. Janice McCann was the first person I spoke to about my daughter and was incredibly supportive. It was so good to know we were not on our own and that there were many people in the North West who were there to help, support listen and become friends. Five years on and I love volunteering with the charity. The committee and many others have become good friends and I am very pleased to serve as a trustee, something I see as a great honour. I am very keen to help represent some of the views of parents and families who are affected by lupus.

I am also Chair of the young people’s charity RAiISE which I helped to set up with my daughter and four others. We help to support young people who live with a long term invisible condition by offering guidance and support to teachers. Very often when a condition is invisible mistakes can be made and life at school can be made even more difficult for a child and young person living with a chronic and long term condition.

For the last year I have also been a board member for the European Network of Arthritis in Children, ENCA, working with other charity and support groups across Europe. It is good to work with other parents who have similar experiences and work on projects together to raise awareness and try to make things better for children.

My career has always involved working with young people. I was a primary school teacher for a number of years in Manchester which I really enjoyed.

Now I work at Alder Hey Children’s Hospital in Liverpool. My work involves letting young people and families have a voice in the design of research and raising awareness of why it is so important that research is designed in the right way for them. No week is ever the same and I love now working at the hospital that looked after Sophie so well.

In my spare time I love spending time with my family and friends.

 

I have been a Guide Leader for Girl Guiding UK for the last five and half year and love having fun doing this!  I am also very fond of music, attending concerts and going to the theatre.

 

One of my favourite things to do is to travel. I love everything from walking in Scotland and the Lake District to travelling much further abroad. I have been lucky to visit some great places and the list of countries I still want to visit keeps growing. Fingers crossed for a lottery win!

 

It has been good to meet so many other members from the North West over the last few years. We are lucky to have such a friendly and caring group