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We’ve won the lottery! (Kind of…)

Date Published: 10/06/2025

We are delighted to announce that the amazing work of our Youth Board has been recognised by the National Lottery! 

Over the past few years our Youth Board has gone from strength to strength, working hard to support other children and young people affected by PANS and PANDAS. We are so proud of everything they have achieved, and we are delighted that the National Lottery have also recognised this awesomeness!  

We have just been told that the National Lottery Community Fund will be supporting our Youth Board over the next eighteen months. This funding will go towards making the board even stronger, through the co-creation of fantastic projects and resources, and by fuelling new exciting ways for them to raise awareness of PANS and PANDAS. 

 

Our CEO holding a cheque for £20,000, from the National Lottery Community Fund.

Over the next 18 months, our Youth Board will develop: 

 

  • New resources for children, young people and their families. 
  • A dedicated, moderated chat space for our young members 
  • Advocacy days and in-person activities for young people 
  • Increased awareness and recognition amongst health and education professionals 

 

“Our Youth Board members are united by their lived experiences of PANS or PANDAS. Despite the difficulties they face, they remain unfailingly enthusiastic, creative and supportive of one another.

Their drive to support other young people living with PANS and PANDAS is an inspiration. It is wonderful that their work has been recognised by the National Lottery Community Fund, and that we can now help them to have an even bigger impact on every young person affected by these conditions.”
Katy Hindson, Health and Policy Lead

And there’s more!

To make sure the magic happens, we have recruited a dedicated Youth Worker. Clarise will work closely with members of our Youth Board to support other children and young people affected by PANS and PANDAS.  Together, they will collaborate on fantastic youth-led projects designed to raise awareness, challenge miseducation and influence key decision-makers. 

 

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Glossary

  • ADHD
    Attention Deficit Hyperactivity Disorder
  • AE
    Auto-immune Encephalitis
  • ARFID
    Avoidant Restrictive Food Intake Disorder
  • ASD
    Autism Spectrum Disorder
  • CAMHS
    Child and Adolescent Mental Health Service
  • CBT
    Cognitive Behavioural Therapy
  • Dysgraphia
    difficulty writing by hand
  • EHCP
    Education, Health and Care Plan
  • Emotional Lability
    Rapid, and dramatic changes in mood (for example uncontrollable laughter to crying)
  • Enuresis
    wetting
  • GAS
    Group A Streptococcal infection
  • NHSE
    NHS England
  • NICE
    National Institute for Health and Care Excellence
  • OCD
    Obsessive Compulsive Disorder
  • PP
    PANS PANDAS
  • PPUK
    PANS PANDAS UK
  • PPN
    PANS Physicians Network
  • PPSG
    PANS PANDAS Steering Group
  • SENCo
    Special Educational Needs Coordinator
  • SIGN
    Scottish Intercollegiate Guidelines Network to the glossary
  • Tic
    Sudden repetitive movement (motor tic) or sound (vocal tic) which is difficult or impossible to control