Association for Multiple Endocrine Neoplasia Disorders

The Project

Project Superhero! is an AMEND project to develop information resources on MEN1 and MEN2 for children and young people.  The resources produced aim to encourage open family dialogue about the disorders, as well as encourage better engagement from the young people with their medical teams.  These aims are vital for any family living with a chronic genetic condition like Multiple Endocrine Neoplasia.

This project is funded by a 2-year award from the Big Lottery Fund's Reaching Communities Programme and by AMEND.

The Family Focus Days

The Project includes 2 Family Focus Days; the first to assess levels of understanding of children and teenagers prior to the production of the information resources; the second to reassess these levels after use of the developed resources. These activities will help us to gauge the success of our exciting and ambitious project.

Family Focus Day 1: March 2013

During this first event, both adults and the youngsters ploughed diligently through special workbooks, dabbled in art and animation, and shared many stories and ideas throughout the day. Feedback was extremely positive, with one dad even commenting that over dinner that evening his son, 'really opened up and started asking questions'.

Families watch cartoon characters race live on screen!

Click here to view some of the cartoon characters that the kids developed on the day!

Having worked throughout the day in separate adults' and kids' groups, all the families, which included a 'control family' with absolutely no knowledge of MEN, expressed their delight at having met each other.  Their previous apprehension was now nowhere to be seen.

The families were then rewarded for their help with a free day at the neighbouring theme park, which was enormous fun, despite the freezing cold weather.

Thanks everyone who made this event possible: particularly our 6 families, animator, Mr Munro, Kids' facilitator and teacher Anthony O'Flaherty and photographers Jess and Martin Reftel Evans from Amorfo Photography.

Resources

The first resources developed as a result of 'Project Superhero!' were delivered to the AMEND office in February 2014 in the form of Medikidz™ comic books on MEN1 and MEN2. They have been endorsed by the Society for Endocrinology and the UK & Ireland Neuroendocrine Tumour Society.

 

In Medikidz Explain Multiple Endocrine Neoplasia Type 1*, Ruben is transported to Mediland by the Medikidz to help him understand MEN1 in order to help him decide whether or not to have the genetic test.

In Medikidz Explain Multiple Endocrine Neoplasia Type 2*, Cameron visits Mediland with the Medikidz team to help him understand MEN2a and 2b and to overcome his reluctance to attend his hospital appointment.

The comics, which are particularly useful for children aged 8-12, have already been distributed to all registered AMEND members. If you would like your own FREE copy, please either register as a member or contact Helen in the office.

* © Medikidz Ltd

Your feedback is essential, so please help us by letting us know what you think, whether you are a parent, child or healthcare professional by completing our online survey. Thank you.

 

Website Animations

Our website animations on MEN1 and MEN2 were launched at the end of May to complement the comic books. You can watch Daniel's simple and beautifully illustrated explanation of his MEN1, and Lisa's equally superb explanation of her MEN2 on this website or on our YouTube Channel under 'Films for Children'.

Daniel has MEN1 like his mum Lisa has MEN2 like her dad

Once again, your feedback is essential, so please do take a few minutes to let us know what you think by completing this separate online survey. Thanks!

A-Team

‘Project Superhero!’ would get nowhere without our special project medical advisory team, nicknamed the A-Team.  They deserve a big mention and huge thanks for their assistance and invaluable advice on our resources.

The A-Team comprises: Dr Sabah Alvi (Leeds), Dr Caroline Brain (GOSH), Mr Tom Kurzawinski (GOSH), Carol Giblin (Manchester), Eshika Haque (Guy’s), Lee Martin (The Royal London), Jenny Walker and Amanda Whitehead (Leeds).