3 Half’s 1 Goal: Running for Pitts Hopkins

Throughout September and October I’m running 3 half marathons to raise money for Pitts Hopkins UK. 

Pitts Hopkins Syndrome (PTHS) is an ultra-rare neurodevelopmental condition which causes delayed motor development and moderate to severe intellectual disability. Children with PTHS tend to be either non-verbal or have a limited vocabulary. In many cases, they may suffer severe constipation while some can have reflux. Many have seizures. Signs of PTHS can include daytime apnoea and hyperbreathing.

My cousin Hamza (who coincidentally is my best friend in the whole world) was born with PTHS and is something he has to navigate on a daily basis. 

PTHS UK raise awareness among health professionals to be able to identify someone with Pitt-Hopkins syndrome as well as to find parents of children dealing with PTHS via their social media. Their fundraising goals are to support and advocate for parents while delivering the latest information to families and encouraging much-needed research about the breathing anomalies and the dysfunctional autonomic system which interfere with the quality of life of those with PTHS.