We are thrilled to announce our first publication has gone out to our community. The book was written by Helen with the support of many of our FOP families around the world, as well the medical professionals. It is a much needed and long awaited resource. It was made possible thanks to a generous grant from Regeneron.

The book is written for parents, carers, schools, teachers, club leaders… in fact, anyone who is involved in the learning journey of a child with FOP. It aims to give an overview and brief explanation of the condition. It also discusses other health complications children with FOP face such as flu and hearing loss. It explains the challenges children with FOP and their families may face, accessing a school setting, as they come to terms with living with FOP.

The book offers practical suggestions for classroom practitioners for things to look out for, as well as ideas and strategies to enable a child with FOP to make the most of their school days. There is also a library of websites which outline further charities and organisations that can offer further support and guidance.

The book has received high praise from families and schools, both in the UK and further afield in America, Australia and beyond… There are also plans in the pipeline

But perhaps most excitingly, the book contains many photos of all our children with FOP, living life to the max, and making the most of their school days, which is what it’s all about.

To download a copy of the book, click here: