PSPA launched a new web page today 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.
Advertisement Advertisement Did you know with an ad-lite subscription to Milton Keynes Citizen, you get 70% fewer ads while viewing the news that matters to you. 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.
Although the web information is now live, developments will continue to ensure young people are able to find the information and help they need after a parent, grandparent or Aunt or Uncle are diagnosed with PSP or CBD. Future developments could include podcasts, an animation and a story book. Advertisement Advertisement PSPA Director of Service Improvement and Development, Carol Amirghiasvand said: “PSP & CBD are rare neurological conditions which have widespread impact across a whole family.
“Over the past few years, we have been expanding our information and support to ensure everyone affected 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.” Advertisement Advertisement 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.” The information for young people was launched today on International Youth Day and can be found at: www.pspassociation.
org.uk/information-for-young-people/ 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 [email protected] for more information.
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