1) Sign up for free membership via the link on our homepage – the details you provide on our membership sign-up form helps guide the services we provide, such as the location of events and topics we address on our website and in the journal. Please fill out the form as fully and accurately as you can.
2) Mention us at you next medical appointment – it is surprisingly difficult to raise awareness of our charity amongst healthcare professionals. At your next appointment tell your doctor and nurse about us and see if they would like us to send them any information or leaflets for other patients.
3) Ask your school, community nurses or carers if they would like any training – we have dedicated nurses ready to train and educate in the world of Mitrofanoff but, again, they may not be aware that help is available.
4) Become a buddy – when people first find us they often feel lost and confused. From your perspective of a more experienced patient, you could offer peer-to-peer support to guide them through the first steps on their journey.
5) Become a volunteer – we are so fortunate to be able to rely on a variety of fabulous people who offer their time freely to help our charity, but there is always more to do! If you would like to offer some time or expertise with events, marketing, website development etc, please get in touch.
6) Become a fundraiser – our website details the enormous variety of ideas that our heroic fundraisers have used in the past to raise vital funds to help others – a sporting challenge, a dress-down day at school or work, a cake sale or a coffee morning are just some ideas but I’m sure you can think of more. If you need help organising or promoting an event please contact info@mitrofanoffsupport.org.uk.
7) Take part in our surveys – we shall shortly be rolling out some surveys that will help us explore the possibility of doing some research. As the largest cohort of Mitrofanoffers in the world, your involvement could guide future advancements in medical practice.
8) Choose us as your charity on Smile Amazon – as Christmas approaches, why not choose Mitrofanoff Support as your charity? It’s easy and costs you absolutely nothing – click here for more details.
9) Tell your story – sharing your journey, whether on the website or in this journal, helps others to put their own journeys into perspective and reinforces our key message: together we will never be alone.
10) Attend our Patient Education Days – the roaring success of our latest event in Birmingham shows what can be achieved when people come together in numbers to share their experiences.