There’s new, exciting, and groundbreaking research on the horizon for SADS conditions. At the SADS Foundation, we’re working with companies who are almost ready to recruit participants for first-of-their-kind clinical trials for these new therapies. Make sure to fill out this ten-minute research survey – so we can learn more about you and your family and help connect you to research studies you might be eligible to participate in.
Alexis was diagnosed with Long QT Syndrome a year after collapsing during a pep rally in seventh grade. Her Long QT was missed by two cardiologists and two providers before she received a diagnosis. But receiving a diagnosis was just the beginning of Alexis’s heart journey.
Alexis has tried several different methods of treatment since then – including beta blockers, mexiletine, and devices – but hasn’t found one that works for her as a competitive dancer.
“We’ve had a lot of setbacks – including a few medications that didn’t work – and she ended up with an epicardial ICD and a pacemaker,” says her mother, Meredith. “And there were a lot of challenges – at first, on the beta blockers, she couldn’t get her heart rate up, and couldn’t dance at a competitive level.”
After returning from dance practice this spring, Alexis collapsed again – and her ICD recorded a dangerous rhythm. This means that she will need to escalate treatment.
“We are fortunate that there are medications that help many patients with LQTS, but because these medications were designed for other heart conditions, they don’t work for all patients and the side effects can be intolerable for some like Alexis,” says Meredith. “Medicines that are designed to treat LQTS may be much better tolerated – and hopefully even more effective.”
At SADS, we’re working with companies like Thryv Therapeutics – who have recently completed their Phase 1 clinical study into a targeted medicine for the treatment of Long QT Syndrome, the first of its kind – to help advance new treatments and therapies for people living with Long QT Syndrome.
“We are working as hard and as fast as we can to pursue treatment for those living with Long QT Syndrome.” says Debra Odink, President & Chief Development Officer at Thryv Therapeutics. “Thryv will soon be initiating a natural history study called ‘MyQTWave – A Pivotal Patient Experience’ where we hope to learn more about the lives of people with Long QT Syndrome. This study will help them understand the stress and anxiety that comes with living with a rare heart arrhythmia.”
As Alexis prepares for Worlds this spring with her dance team, she is hopeful that one day new and improved treatments will be available for LQTS. “I am excited for the potential treatments research can offer for LQTS, from medication that could treat my condition without needing several surgeries to potentially even a cure one day,” says Alexis. “The future is looking brighter!”