This week has been a powerful reminder of why we started this journey, to honour Poppy’s memory by creating change that could save lives.
Following recent media interest in our campaign, we’ve heard from families across the country who had never heard of inherited cardiac conditions until now. Many are learning about these risks for the first time through Poppy’s story. That tells us something important: awareness is still not where it needs to be. Inherited cardiac conditions are genetic heart rhythm disorders that can cause sudden cardiac arrest in otherwise healthy children and young people, often without warning.
Heart Month Focus: Screening at Birth
As Heart Month begins, we are focusing on one clear goal, adding inherited cardiac conditions to the newborn screening pathway.
These conditions are treatable. But without early detection and access to specialist care, they can be fatal. Too often, families only discover them after tragedy. Newborn screening would give children the chance to be diagnosed early and protected before symptoms appear. Early detection allows treatment and specialist care that can dramatically reduce risk.
Recognising the Warning Signs
There are warning signs that should never be ignored. Fainting or seizures during or after exercise are major red flags and should always trigger urgent medical assessment. Other symptoms can be subtle, such as unexplained anxiety, light-headedness, or a child avoiding sport. Because these signs are easy to miss, we cannot rely on symptoms alone. Screening at birth provides a safety net that protects every child.
Driving Change Through National Action
We continue to push for a debate in Parliament because meaningful change requires national action. No family should lose a child to a condition that could have been detected and treated.
This week also marked our first trustees meeting of 2026, where we set clear priorities for the year ahead: expanding awareness, strengthening advocacy, and driving forward our campaign for newborn screening. We are more determined than ever to see lasting change.
Poppy’s Legacy and Our Mission
At the heart of this work is Poppy. She was full of light and energy. When we campaign for screening, we are fighting to protect the futures of other children and families. Every conversation moves us closer to prevention.
Alongside our screening campaign, we are developing practical tools to help clinicians recognise inherited cardiac risk earlier. But awareness alone is not enough. Systematic newborn screening is the most effective way to prevent avoidable loss.
How You Can Help This Heart Month
As Heart Month begins, we ask families, clinicians, and policymakers to join this conversation. Learn about inherited cardiac conditions. Talk about family history. Support efforts to improve early detection.
Together, we can build a future where preventable tragedies are truly prevented.
Thank you for standing with us and helping to carry Poppy’s legacy forward.