Updated: Oct 20, 2022
PANS PANDAS UK Youth Advisory Board met for the first time in early October.
Earlier this month, PANS PANDAS UK hosted the first ever meeting of our brand-new Youth Advisory Board. The board is made up of 15 children and young adults (8-21 years old) from across the UK who are living with PANS and PANDAS.
For many this virtual meeting was their first opportunity to connect with other young people with PANS or PANDAS. It is hard to convey how magical it was to witness what it meant to everyone present to be part of a community with people who just ‘get it’.
One parent told us; “My daughter really enjoyed the first Youth Advisory Board meeting this evening. She said she felt like finally she wasn't alone, and that other people understood how she felt.”
Brought together by a common wish to help support and encourage others, these incredible young people wasted no time in getting to know each other and starting to brainstorm ideas around the theme ‘What do young people want grown-ups to know about PANS and PANDAS?’.
The results of that brainstorming exercise were fantastic. In fact, in this one five-minute exercise, our board members demonstrated perfectly how powerful it is when young people are given the chance to speak up.
Together we are going to do some really great things to support other children and young people with PANS and PANDAS. We can hardly wait for the next meeting!