Story
PWSA UK is a small charity providing lifelong support to all those affected by Prader-Willi syndrome (PWS). They provide a dedicated helpline, a comprehensive information hub, a regional network of peer support groups with a varied programme of community events, training for professionals working with people with PWS, and support for vital research.
I am raising money for this incredible charity as I have seen first-hand the amazing benefits associated with the work of the PWSA, through interactions with my cousin, Amelie, who has Prader-Willi Syndrome.
PWS is a is a rare, lifelong genetic disorder. It causes low muscle tone with consequent motor developmental delays, a mild to moderate learning difficulty, incomplete sexual development, and emotional and social immaturity, which can lead to challenging behaviours. During childhood, an overwhelming and insatiable chronic appetite usually develops which, without rigorous food management and exercise regimes, leads to food seeking, stealing and life threatening obesity.
I am using the opportunity to run the London Marathon, not only as a huge personal challenge, but most importantly to try and give back just a small amount that PWSA has given to my family.