The power of our Lived Experience.
FAST UK Trustee, Sarah Washbrook, proudly represented FAST UK at the national Genomics Showcase, held at Cardiff City Stadium, where she shared her family’s journey of living with Angelman syndrome and the lived experience of caring for her son, Ivor.
Speaking to an audience of over 500 people, Sarah gave a powerful and deeply personal presentation about both the joys and challenges of raising a child with Angelman syndrome. Her talk highlighted the importance of genomics, the urgent need for continued progress, and why families like ours must keep pushing for awareness, research, and treatments.
Her honest and passionate patient story clearly resonated with the audience. We were incredibly proud to receive this feedback from the organisers, Genetic Alliance UK:
“The patient story from Sarah Washbrook – her talk got to the heart of why we all work in genomics.”
Sarah also shared a powerful message of hope for the future:
“Despite the hardships, there are so many reasons to be hopeful, excited even.
We are on the cusp of change, especially in the rare diseases world.
We are seeing huge leaps forward in genom, right through from earlier diagnosis to research and treatments; drive and impetus, and regulatory reform within the MHRA to make the approval process more flexible, appropriate and faster.
There was a time, not that long ago, that we would use the words ‘management’ and ‘care’.
But now, families like mine can hear the words ‘investment’, ‘treatments’, ‘future’ and ‘hope’.
Let’s turn this into something positive. Let’s hope together.”
The Showcase also offered a valuable opportunity to connect with others and explore how genomic science is changing lives — a dynamic day of discovery, learning, and inspiration, showcasing some of the latest advances in genomics and how this is shaping the future of health and medicine.
At FAST UK, we believe that lived experience is one of the most powerful tools we have. Every conversation matters. Every new person we speak to is one more person who now understands Angelman syndrome and the importance of finding treatments.
Together, we really can make a difference.
To learn more about the Genomics Showcase and the work being done across Wales in genomics, visit the Genomics Partnership Wales website: https://genomicspartnership.wales/
