This International Youth Day we are proud to launch our information for young people.
The aim of the web-based information is to help young people who have family members with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) to gain a better understanding of the conditions.
The information was developed in collaboration with a Young Person’s Advisory Group. This group ensured the information was pitched at the right level and answered all the questions young people might have about the conditions their family members are living with.
The Young Person’s Advisory Group currently has eight members, aged between 9 and 17 years old, and they met online monthly over a six-month period to write the information and feedback on designs for the web page Group members included: Charlie Lister, Coen Maric, Emily Blackwell, Jessica Roberts, Kian Chauhan, Lucy Sutcliffe, Jessica Tarr and Aurelia Tarr.
Key features of the new web information include clear diagrams explaining where PSP & CBD develop in the brain, answers to essential questions and voice notes from members of the advisory group sharing details of their experiences.
PSPA Director of Service Improvement and Development, Carol Amirghiasvand said: “Over the past few years, we have been expanding our information and support to ensure everyone affected by PSP & CBD has the support and understanding they need to come to terms with a diagnosis, and plan ahead.
“We are pleased that as part of these expansion plans, we now have information available to help support the younger members of a family. We knew it was important the information developed was a collaboration with young people, to ensure we provided information that is easy to digest.
“We want to thank all the young people on the advisory group for their ideas and input. We are excited to continue working with them to develop more resources for young people in the future.”
Coen, aged 9 years old, shared why he wanted to join the Youth Advisory Group to develop information for young people: “I wanted to join the group because my grandad has been diagnosed with PSP. I want to help my grandad and other families affected by the condition. I’ve enjoyed being involved and my family are really proud of me too.”
Emily aged 15 years old added: “I got involved in the group because I wanted to learn more about PSP & CBD and raise awareness of the conditions. My family are really happy I have been helping PSPA.”
Visit the information on our website, here.
Any young people who have a family member living with PSP or CBD are welcome to join the advisory group to help with future projects. Please email volunteering@pspassociation.org.uk for more information.
