In April 2020, our youngest daughter Matilda was diagnosed with Angelman Syndrome, a day before her first birthday.

Angelman syndrome (AS) is a rare neurogenetic disorder that affects approximately one in 15,000 people - about 500,000 individuals worldwide. Children and adults with AS typically have balance issues, motor impairment and debilitating seizures. Some individuals never walk. Most do not speak. Disrupted sleep cycles can also be a serious challenge to the individuals and caretakers. Individuals with AS require continuous care and are unable to live independently. They have a normal life expectancy. 

This is life today for people living with Angelman syndrome, but hope is here. Scientists believe that AS has the greatest potential for being cured when compared to other neurogenetic disorders, and FAST (Foundation for Angelman Syndrome Therapeutics) has a plan well underway to achieve just that. 

FAST is an organisation of families and professionals dedicated to finding a cure for Angelman Syndrome and related disorders through the funding of an aggressive research agenda, education and advocacy. The Foundation is committed to raising awareness as well as assisting individuals to realise their full potential and quality of life. 

We are confident that our goals are within reach and together, with your help, we will change lives.

The challenge:

Upon hearing of Matilda's diagnosis, 6 of my closest school friends decided to come together to raise funds for Angelman Syndrome. 

The team of 6 - Elliot, Alex, Mike, Lewis, Luke and Will are climbing the equivalent of Mount Everest and K2, the two highest mountains in the world at 57,000ft combined, on Mt Snowdon in Wales over a period of 24 hours. 

In order to complete this, they will walk in teams of 2 through the day and night of 5th November 2021, conditions permitting. All 6 members have begun preparing in earnest to ensure that they do justice to the event, FAST and most importantly, Matilda.

By completing this event, we hope to not only raise as much money as possible for FAST, but also to raise awareness of this rare condition. 

Please donate what you can!