In June 2024, the SADS Foundation is bringing the LQTS and CPVT patient communities together for an FDA Externally-Led Patient-Focused Drug Development Meeting (EL-PFDD). This meeting gives the FDA and other key stakeholders — including researchers, biopharma companies, healthcare providers, product developers and federal regulatory partners — an important opportunity to hear directly from patients, their families, caregivers, and patient advocates about the symptoms that matter most to them, the impact the disease has on patients’ daily lives, patients’ experiences with currently available treatments, and patient’s priorities for therapeutic outcomes. Learn more about the EL-PFDD here.

During the EL-PFDD, you’ll hear from patients and caregivers whose lives have been affected by LQTS and CPVT tell their stories. Here, you can meet the panelists who will be presenting their stories during these sessions.

We want to hear from YOU during the EL-PFDD about how LQTS and CPVT has affected you or a loved one’s life. Your inputs will become part of the Voice of the Patient report prepared after the meeting and will become a formal submission to the FDA as well as guidance for ongoing and future research. We want and need to hear from families with LQTS and CPVT. You can register to join the EL-PFDD here.


Long QT Syndrome



Lene’s journey began on December 27, 2003.  Her family, consisting of herself, her husband Jim, and their daughters Rebecca (4) and Morgan (2) had been celebrating Christmas with their extended family members.  The little girls were very excited!  After coming home from the party, Lene bathed the girls in the bathtub and tried to clothe them and brush their hair as they continued to play with each other.  The next thing she knew, Lene turned around to find her daughter Rebecca on the floor making little growling sounds with her eyes half open.  After a moment, Lene Realized there was something seriously wrong with Rebecca.  Lene ran to Jim with Rebecca in her arms.  Handing their daughter over to Jim, Lene called 911.  After 50 minutes of resuscitative procedures, Rebecca’s heart was shocked back into rhythm—but her brain had been without oxygen for too long.  What was worse, there was no explanation for Rebecca’s condition.

It was shortly thereafter that the Righeimers had their first encounter with a cardiologist who mentioned the term “Long QT”, but failed to explain the condition further. Read Lene’s story here.



“In January of 2021, I went for a routine mammogram, and they found something. Long story short – I was diagnosed with Malignant Invasive ductal carcinoma – HER 2 positive breast cancer. Well, this was going to be a challenge.

What medications would we use that are safe for LQT? What about chemotherapy? What about nausea and side effects? What about losing electrolytes? This is why I am sharing my story. I thought I am sure I am not the only LQT survivor that this will happen to. I wanted to share my experience and what I’ve learned. Anything to help or encourage another who may face this or something similar.”

Read Mona’s story here.



“I had my first cardiac arrest in 1985. I was a competitive swimmer, trained with the British B team, and swam 5 to 6 times per week. I was the final swimmer in the relay race. I touched the side, and slowly sank to the bottom of the pool while my team celebrated. My coach dove in and pulled me out.

Over 20 minutes of compressions were given until the ambulance arrived and delivered several therapeutic shocks. It wasn’t a pretty recovery, with 2 weeks in a coma, followed by the usual brain recovery therapy; however, I was 16 and youth was on my side. I was diagnosed with having fainted in the pool. LQTS wasn’t on the radar in those days.

To date, I have had 7 cardiac arrests. In my opinion, we need better solutions/treatments for LQTS. For years I have read about CRISPR, Gene Therapy, potential new drugs, but all that is available to date are beta blockers, an AED, an ICD, left cardiac denervation surgery, and lifestyle changes. I want a better option than an ICD and defibrillation. I want a drug that doesn’t have debilitating side effects. I want a treatment that doesn’t require surgery every 10 years. I want a solution that doesn’t have inherent risk of lead fractures and infections. I want to live my best life.”



“I was lucky – I was diagnosed at birth. The doctors knew something was off with my heart rhythm when I was in utero, but the technology back then wasn’t advanced enough to know more than that. I was in distress when I was born, and I was born with heart block along with my LQTS Type 2. I was really fortunate to have pediatric cardiologists on the other side of Ann Arbor who knew about LQTS. I was zipped across town a few hours after I was born, and given my first temporary pacemaker. A couple days later, I was given my permanent pacemaker and started on a beta blocker. I’ve had the same course of treatment my whole life, and had an ICD/Pacemaker implanted in my early 20’s.

Things have come full circle with my daughter, Gabby, who had a similar presentation when she was born – she had heart block, and her first device put in right when she was born. But we knew a lot more this time around.”

Read Suzy’s story here.


“Thirty-nine. That’s how old I am. It’s also the age when my father died.

Losing my dad when I was just 11 years old has had a profound impact on me. Not only was I forced to navigate growing up without him, but I was also diagnosed with the same medical condition that took his life.

I have become my own person, yet at the same time, I will always be influenced by his legacy. Looking back on his life, I wonder about his thoughts, motivations, and goals. He was a firefighter, an EMT, a beloved friend and brother to his 11 siblings. As his second-born child, I often wonder what he saw for me. And now, as I outlive him, I can’t help but reflect on my own life.”

Read Tom’s story here.


About twenty years ago my older sister had an episode that almost took her life. Through this, she discovered she had a genetic disorder they called Long QT. At the time it was very foreign to doctors as well as us. Nobody had ever heard of this. Matter of fact, the doctors did not even know what to do. As she was treated they ended up putting a pacemaker in her. Since then she has done well and not had any problems.

She told her siblings to go and get checked. I decided to go and get checked about five years ago. The doctor did an EKG and confirmed that I had Long QT. There was no concern or medication given at this time. In the fall of 2000, I felt strongly that I needed to be checked again through a cardiologist. If was confirmed and further testing was required due to the episodes I had experienced earlier in my life.

Read Mark’s story here.


“Being a parent is an amazing blessing, however, being a parent in general causes around 1,000 grey hairs! Every parent worries about their child. Parents of children with complex conditions worry more than most and deal with situations and pressures that no parent should. I have talked to psychologists as part of the care team around Isla in hospital, which really helped at the time and helped me process a lot of my feelings and fears. I think the most important thing anyone can do for their mental health is find someone to talk to. It doesn’t have to be a psychologist, just someone who will listen and not judge you as you verbalize the things that you’re feeling and going through. I actually find writing my blog is my best therapy as it really helps me find solace and organize my thoughts. This might not work for everyone and I’m sure there isn’t a one-fits-all solution to coping, but the important thing is to not go through it on your own.”

Read David’s story here.





“My first sign was that something was wrong was when I lost consciousness on a treadmill. I passed out one more time in the gym about a month later. Up until this time in my life, I never had any indication that I might have a heart condition. Other signs that something was wrong was that I would get light-headed and short of breath throughout the day. I did not seek medical advice until about two months later after having another event in the gym where I felt very close to passing out again on the treadmill. I posted about it on Facebook and a friend of mine whose father is a cardiologist mentioned that my issue could be heart-related.”

Read Shanief’s story here.



The year 1987 brought an unexpected tragedy to the Osterhout family when their son Matt, age 17, died suddenly. As part of his regular routine, Matt had jogged from his home to work. However, minutes later he was gone. Matt’s autopsy did not reveal an explanation, but his death began a journey of discovery for remaining family members.

At approximately the same time in Salt Lake City, Dr. G. Michael Vincent was beginning to study cases of sudden cardiac arrest and in the early 1990’s, discovering the first Long QT mutation and founding the SADS Foundation. However, another decade went by before the Osterhout family would connect with the SADS Foundation. In 2001, the unbelievable happened again. Britni Osterhout Cooper (Matt’s sister) died suddenly leaving a husband and two young daughters, Quincy and Kennedy behind. The autopsy offered no clues to the cause of death.

Read Pam’s full story here.



“When I was 11 years old, I passed out in school. I was taken to the emergency room and many tests were done. The doctors were suspecting that it was my brain but after many tests everything was normal. I went back to my normal activities. When I was 13 years old, I had a seizure when I was running in gym class, and I went to the emergency room again. The doctors said since I already went through the testing for my brain and it was normal, it was probably my heart. After going through EKG, echo, 24-hour machine and a stress test, I was diagnosis with long qt syndrome. It was a very scary feeling because I did not know what was going on and so many doctors were surrounding me. I was told I needed to have an ICD put in right away and needed to be put on medications. I was then hospitalized while waiting for my surgery. I had to translate for my parents as to what was going on with me because they did not speak much English.”

Read Aimmy’s full story here.


“On May 5th we had another appointment so that we could have the “official” diagnosis, even though we pretty much already knew. He laid down a lot of rules, a lot of limitations. I’m going to be honest, I don’t remember much about that appointment because I spent most of it playing solitaire trying to keep it together. He said I would never row again. He said completely seriously, and I quote, “what’s the difference between playing the piano?” (you mean besides literally everything?). After that, I just zoned out. My brain couldn’t process any more information at that time. I’m sure he probably thought I was very rude, and I’m not denying that I was, but he could’ve been a little more sensitive. I was 15 and he just turned my entire world upside down. I needed to gather some footing before I tried walking.

When I got back to the car, I just sobbed. In the haze of this diagnosis, we had forgotten to have the nurse validate our parking. The guy in the parking booth looked at me, still sobbing uncontrollably in the passenger seat, and told us not to worry, he would take care of it. My mom tried to cheer me up by taking me to our favorite barbecue place, but some things are more than a rack of ribs can handle.”

Read Rachelle’s full story here.


“Stay positive – every day we’re learning more and more about these conditions, and many people who have them live normal lives. That’s the most positive thing to get from this.

Even with restrictions, there are so many things you can do. As soon as I was diagnosed, my parents got me into golf, and over the past 32 years I’ve been playing and gotten pretty decent. I’m looking forward to sharing it with my daughter Meg.

Even though I’ve been shocked multiple times, it hasn’t slowed me down.”

Read Tom’s story here.



“Every morning I am greeted with the same bittersweet reality. Bitter is just a taste of the eternal emotion of losing a child. Sweet is the ever-present gratefulness that one of our children came back to life after being pronounced dead.

At a time when our world is divided, my boys’ life lessons of compassion, love, and perseverance are what our world needs most to focus on our similarities rather than our differences. It’s an opportunity to lead with love, create awareness, and save lives.”

Read Jen’s story here.