Fundraising for Shine - why it matters to us!

Every year at Maitri Studio we do one or two open days or other events where we raise money for charity. Over the years we have supported Anaka Women's Collective, NI Children's Hospice and East Belfast Counselling amongst others, or we've donated our premises for others to do similar events, for example for Evora Hospice earlier this year. 

This year we're choosing Shine, the UK's specialist charity supporting people living with spina bifida, hydrocephalus, normal pressure hydrocephalus (NPH), and related conditions. 

SHINE stands for Spina bifida - Hydrocephalus - Information - Networking - Equality and those three values are ones we can certainly get behind! We strive to make our website and classes clear, based on information and experience. Our name Maitri means universal friendship and we strive to build community (networking) while making as many events as possible (within the constraints of our building) accessible, whether people experience physical, mental, gender-based, racial, financial or other barriers (equality). 

The primary emotional reason though is that my mother, Veronica Ferry, was diagnosed with Normal Pressure Hydrocephalus (NPH) a number of years ago. Hydrocephalus occurs in many forms but always there is a build up of fluid in the brain (hydro = water, cephalus = brain). NPH mainly occurs in people over the age of 60 and in most cases the cause is not known. It is a poorly understood condition but we can treat symptoms through the use of a shunt, a mechanism which drains excess fluid from the brain. You can read more about NPH on the Shine website. 

For Ma, it has meant losing balance and therefore the ability to walk and move normally without fear of (or actually!) falling over. I started a chair yoga class that she could join in online which she really enjoys - she was after all the person who introduced me to yoga when I was back in single digits! She uses a rollator for short distances but a mobility scooter when she needs to travel further. Ma also has found her ability to think straight compromised, with her short term memory definitely declining. She finds she needs time to think and speak more slowly in social situations. As a former nurse, Ma has a lot of insight into her condition and so is able to rationalise and explain it to people, but not everyone will have that awareness. Of course, that doesn't make the daily experience of living with it always easy. And it is frustrating that so little is known about why this condition arises in some people and not others. 

Shine charity helps people like my mum by providing information about shunts and the condition, and by promoting research and awareness. Through our connection with the charity I have also come to appreciate the issues facing people living with spina bifida. Literally meaning 'split spine' this conditions means that the spinal cord, the vital part of the central nervous system, or the surrounding bones (vertebrae) do not form properly or are damaged. The effects vary a lot, from difficulty walking to full wheelchair use, bladder and bowel issues, or impacts on learning and behaviour in children. Shine helps families, carers and those living with the condition to navigate the challenges of lifelong neurological conditions, while empowering them to live healthy, independent and fulfilling lives. 

Coincidentally then I was asked to offer chair yoga at Shine NI's annual conference last year, and attended with fellow Maitri teacher Clare Byrne who offered some breathwork. It was lovely to meet the local team and members. 

All this has combined with me deciding to run the London marathon in April 2027 in aid of Shine, so this open day will contribute to the funds I am raising for that. As an only-sometimes and quite slow runner, I need all the motivation I can get!

At our open day you can sign up for a variety of classes, or just come in and enjoy a cuppa and some homemade cake (I love baking) and chat with Maitri teachers, or have a go at henna art, or a mini-treatment with one of our therapists (reflexology, massage, counselling) in an informal setting. We ask for a minimum donation of £1 to register in advance for a class, otherwise everything is FREE. Of course if you can donate you can do so online or in person on the day and all funds will go to Shine. 

Read about the open day and how to book here. I'd love to see you there! Can't come to the open day but you'd like to donate? Visit my fundraising page here. 

Thanks so much for reading,

Claire.