by SADS Foundation | May 7, 2025 | Blog
by Sue Bresnahan When you first get a rare genetic diagnosis for your child, it’s like the floor disappears beneath your feet. As a pediatric nurse for 20 years and a mom of three, I knew something was off with my youngest son, Patrick. He didn’t move much. He didn’t...
by SADS Foundation | Apr 14, 2025 | Blog
In college, Alex experienced her first symptom of a serious heart condition – which was dismissed at the time as a panic attack. It’s now been seven years since her diagnosis of ARVC, and she’s joining the SADS Foundation’s ACM Steering Committee to help others who...
by SADS Foundation | Apr 7, 2025 | Blog
I am a 26-year old with a rare heart condition called J-Wave Syndrome. I went into cardiac arrest in 2016 at the age of 18 and received my first ICD at that time. I’ve had many shocks since then but with the help of the Mayo Clinic and Dr. Ackerman I have not had a...
by SADS Foundation | Feb 26, 2025 | Blog
In 2022, Patrick was diagnosed with an ultrarare genetic variant – CACNA1C – which can cause both neurological and cardiac symptoms. Today, Patrick is making incredible progress – and his heart is monitored, too, to prevent any future cardiac episodes. All of this is...
by SADS Foundation | Feb 25, 2025 | Blog
In October 2014, Paul was at the gym when he suddenly collapsed. His doctors thought the cause was dehydration or stress – until he collapsed again while running just six months later. Paul was originally diagnosed with CPVT after a panel of heart tests –...
