I am taking on a challenge this July to support families like ours affected by PANS and PANDAS.

PANS and PANDAS are conditions that often appear very suddenly and affect the physical and mental health of children and young adults. They develop in the wake of common infections (such as Covid-19, chicken pox, influenza, or strep A in PANDAS cases), when the infection subsequently causes a misdirected immune response and brain inflammation.

Our 5 year old son Luke’s acute onset of symptoms were in September 2022 following Covid-19 and strep A infections. Following further infections from November 2023 Luke has been more severely affected at times and has not been fully back to baseline/himself since then. Last week Luke got a virus/cough and his symptoms have flared again.

NHS doctors including GPs, hospital paediatric registrars, community paediatricians and neurologists sadly do not understand PANS and PANDAS. PANS PANDAS UK are the only UK charity created to educate the medical community and general public about these conditions with a view to ensuring better diagnosis and early effective treatment for those affected with these little recognised but life changing conditions.

This small but mighty charity has been absolutely key in the achievements that have happened in the last year (see some below) as well as providing on-line and face to face support groups, training, on-line resources for parents, health and education professionals and children impacted by these conditions and so much more:-

• 12th September 2023 - PANS and PANDAS were discussed and recognised in parliament

• 20th March 2024 – won the Smiley Charity Film Awards to help increase awareness of these conditions www.youtube.com/watch?v=H5Fiw0z1Z8g

• 19th April 2024 – the inaugural meeting of the PANS PANDAS clinical guidelines development group

• 23rd May 2024 – the inaugural meeting of the Education, Social Care and Health group

Families impacted by these conditions really need the momentum to keep going so that they know help is coming and that they are not alone.

If you are reading this then it is good to be raising awareness of these conditions and the challenges that families face getting a diagnosis and treatment. If after reading this, you decide to sponsor me doing a walk from Maidenhead to Windsor on Sunday 21st July to raise money for this charity – I thank you.

This charity also realises the impact on children that have a sibling with these conditions like our 7 year old daughter Niamh.

The children always say it best so please listen to the PANS and PANDAS UK One Voice Project video on the link below (please scroll down a bit to find the video):-

https://panspandasuk.org/support-resources/for-educational-professionals/

Thank you.

PS There are many families that would love to do a challenge to support this charity but they cannot because of the impact to their child and family.