A UK charity has launched new information to help increase support available for families affected by two rare brain conditions. 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.

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.

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.”

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 volunteering@pspassociation.org.uk for more information.

---

Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) are two rare neuro-degenerative diseases.

They are caused by the loss of neurons in certain parts of the brain. Over time, this leads to difficulties with balance, mobility, speech, vision, swallowing and cognition.

Both conditions are life limiting. There is no treatment and no cure.

Currently, around 60% of people living with either disease, are initially misdiagnosed with other conditions including Parkinson’s, stroke and depression.

PSPA is the only UK charity dedicated to creating a better future for every affected by PSP & CBD.

We will do this by:

• Providing information and support to enable families living with PSP & CBD to live their best possible lives

• Improving the quality of life for people living with the condition via research and awareness raising

• Putting the voice of the PSP & CBD community at the heart of what we do.

For more information please visit www.pspassociation.org.uk

---