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Global Spotlight: Heather Brady

When we received Cecilia's diagnosis in 2020 when she was 2 years old, it felt like an overwhelming blow, and when we were told there was no cure, we just could not accept this and started looking straight away at what we could do for our beautiful girl. We refused to merely accept Cecilia’s fate; instead, we searched for solutions. We contacted genetic centres, hospitals, specialists but then came across FAST UK. We found solace and purpose through FAST. Their relentless pursuit of a cure resonated with us, and we started our fundraising journey with them.

Our first fundraiser, a 240+ mile cycle from Manchester to Edinburgh marked the beginning of our ‘Cycle for Ceci’ team. Since then, our team has grown with each event, including community-driven initiatives like the Junior ‘Cycle for Ceci’ which received incredible support and camaraderie. We will continue with many more cycle events in the future.

In 2023, we decided to organise a golf day and evening dinner to honour Cecilia’s memory and ensure she is always remembered. This event serves as both a celebration and a means to raise awareness of Angelman syndrome and FAST UK, perpetuating our commitment to finding a cure. With the success of our first event, we are now gearing up for our 2nd Golf event and aspire to make this an annual tradition, generating both awareness and funds for FAST UK.

We are determined that Cecilia’s passing will not be in vain. We are committed to supporting FAST in her memory, ensuring that her legacy is one of hope and progress for others facing Angelman syndrome.

Through this journey with FAST, we discovered a community of unwavering strength and boundless compassion. What began as a journey of acceptance transformed into hope, fuelled by our determination and the incredible families we’ve encountered along the way.

Interested in attending The Ceci Golf Cup on Friday, June 21st in the UK?

Register for the Ceci Golf Cup here.