Texas & Me: SADS Foundation
Jennifer Berko, Community Engagement Coordinator, talks about her story and the SADS Foundation with Texas & Me.
Patient-Focused Drug Development for Arrhythmogenic Right Ventricular Cardiomyopathy/Dysplasia Heralds a New Chapter in Patient Advocacy
The SADS Foundation hosted a virtual externally-led patient-focused drug development meeting (EL-PFDD) with the US FDA on June 20, 2023. The meeting was designed to educate the FDA and other key stakeholders, including patient advocates, drug developers, and health care providers on the patient’s perspective about the challenges of living […]
Cardiogenomic testing is a must for certain patients, so why is adoption by cardiologists so low?
“We talk to families every day who have had a disease in their family, but it didn’t pass to them. But we also hear from people who have had cardiac events, and they wish someone had done genetic testing so they could have been treated appropriately,” Ms. Lara said.
A Twin’s Tale: The Critical Role of Genetic Testing and Knowing Your Family Health History in Managing Heart Health
In 2016, Alesha started experiencing symptoms like severe nausea and syncope (fainting) – but didn’t know what could be causing them. That August, she went to the hospital for an unrelated medical procedure. She was woken up from anesthesia by her doctor, who asked, urgently, if she had any known […]
SADS Educates FDA on Living with ARVC/D Through ELPFDD Meeting
SADS hosted a virtual EL-PFDD meeting with the U.S. FDA on Tuesday, June 20, 2023 to educate the FDA and other key stakeholders on the patient’s perspective about the challenges of living with ARVC/D with the limited therapies available today.
CPR: Every Moment Counts
Alex doesn’t remember much about what happened on the life-altering day he was at a playground with his mother, when he was 4 years old. “We were at a children’s park in San Jose [California], I was playing at the top of a slide, and I suddenly collapsed,” he says
SADS in the Media: Our News Piece Airing Across the U.S.
We worked with Ivanhoe News to produce this piece about the warning signs of SADS conditions to help spread awareness on news channels across the United States.
How Genetic Counseling Helped a Patient with Rare Heart Condition
Recent high-profile cases of sudden cardiac arrest are bringing attention to rare forms of hereditary heart disease this National Heart Month. However, you don’t need to be famous to learn and advocate for heart health. Take it from Julia – who was diagnosed in 2020 with ARVC.
Navigating a Family History of Long QT Syndrome with Genetic Counseling
Sometimes you can’t tell that you have a sudden arrythmia death syndrome (SADS) condition until you undergo genetic testing. Genevie was diagnosed with Long QT Syndrome in 1997 – but because genetic testing wasn’t commercially available, she didn’t know her genetic mutation until 2009
Cardiac Arrest (SCA) Awareness: Courtney’s Story
Courtney West didn’t know that she had a potentially fatal heart condition until her brother, Jacob, died suddenly during a football practice from sudden cardiac arrest (SCA) in 2013. Jacob was a multisport athlete who’d had several school physicals, none of which showed any problems. “We were completely blindsided,” says […]