PLN Genetic Mutation Awareness

02/10/2026

February is American Heart Month ❤️

A time to raise awareness, honor the journeys of those living with heart disease, remember the lives impacted, and stand together in support of families, survivors, and those we’ve lost.

Heart disease doesn’t always look the same. It affects people of every age, every background, and every story. For some, it means daily medications and monitoring. For others, it means genetic testing, lifestyle changes, procedures, or learning to live with the unknown. And for many, it means loving and supporting someone who carries this diagnosis.

This month is about education, early detection, advocacy, and community. It’s about reminding each other to listen to our bodies, learn our family history, prioritize our health, and check in on the people we love.

To everyone living with heart disease: you are strong, you are seen, and you are not alone. 🫀

We stand with you this month and every month

12/30/2025

As we welcome the new year, we reflect on the progress made and the work still ahead. Here’s to continued awareness, research, and community in the year to come.

What are your New Year’s resolutions for 2026?

12/25/2025

This holiday season, we honor the strength of families living with PLN and the researchers working toward better treatments and a cure. Thank you for walking this journey with us. Warm holiday wishes from the PLN Heart Foundation

12/19/2025

PLN R14Del is a rare genetic heart condition, but its impact is anything but small. One mutation can affect how heart muscle cells handle calcium, setting off changes that influence heart structure, rhythm, and long-term function.

What makes PLN especially challenging is its variability. Some carriers feel well for years, while others develop arrhythmias or cardiomyopathy early. Two people in the same family, carrying the same mutation, can have completely different journeys.

This unpredictability is why genetic testing, regular cardiac monitoring, and research matter so much. Understanding PLN earlier allows for surveillance, prevention, and life-saving intervention; before symptoms become severe.

At the PLN Foundation, we’re committed to education, connection, and accelerating research so genetics don’t dictate outcomes in silence.

Knowledge changes trajectories

12/14/2025

12/14/2025

12/13/2025

Use the following link to view the interview (in English):
https://www.youtube.com/watch?v=yc3dTPVsTSM

Dr. Dean Jansen, a retired orthopedic surgeon, secretary of the PLN heart foundation, and also a carrier of the gene. He will be involved in the upcoming PLN information day via zoom (the zoom link information is located on the titled post 'PLN Information Day').

In this interview they discuss what PLN is and the changes that occur with the mutation and how it affects carriers or those around them.

Dr. Jansen goes into detail about his personal experiences and how it has affected his life. It is important to keep in mind every case is different, some may relate to his case and symptoms and others may have the mutation without symptoms.

12/13/2025

Conversations about mortgages and life insurance are hard enough, but living with or being at risk for PLN R14Del can mean facing them much earlier in life than expected. For some families, parents are even forced to consider these decisions for their children before genetic testing results are known.

There is a lot of fear and misinformation around this topic, so it’s important to know the facts.

You cannot automatically be denied a mortgage or life insurance simply because you are a carrier of the PLN mutation. The idea that hereditary heart disease makes insurance impossible is a common misconception. While insurers may ask additional questions above certain coverage limits, this does not mean automatic rejection.

Importantly:
• Speaking with a clinical geneticist does NOT affect your ability to obtain insurance or a mortgage
• You may apply for life insurance before receiving genetic test results and if accepted, your policy cannot later be changed, excluded, or repriced based on a positive result
• If you experience challenges during the application process, your clinical geneticist can help advocate and provide guidance

These are deeply personal and often overwhelming decisions, especially when genetics are involved. You are not alone in navigating them, and you deserve accurate information, not fear-based assumptions.

For those looking to learn more, Dr. Matthijs Timmermans of the Dutch Association of Insurers provided a detailed explanation on insurance and PLN in 2021. The video is available on YouTube, and English closed captions and auto-translation can be enabled.You can watch it here: https://www.youtube.com/watch?v=6MAG3IXT42c

If you need support, resources, or help starting this conversation, reach out to us via DM, our website, or our Facebook community. Knowledge creates options and options create peace of mind

12/13/2025

Living with PLN R14Del doesn’t mean stopping life, it means learning how to listen to your body and work with your care team.

In general, staying active is good for the heart. Regular movement supports cardiovascular health, mental well-being, and overall quality of life. Many people with PLN can continue normal daily activities and exercise, but it’s important to respect your personal limits and avoid pushing beyond what feels safe.

Because everyone’s situation is different, discussing physical activity with your cardiologist is essential. Your care team can help guide appropriate activity levels or refer you to cardiac rehabilitation, where exercise is supervised and tailored to your heart’s needs.

Symptoms can fluctuate. Someone with PLN may feel well one day and significantly worse the next. If you are experiencing symptoms, it’s important to communicate openly with the people around you, whether that means saying no, adjusting plans, or setting flexible expectations at work and home. Making commitments with room for change helps protect both your health and your energy.

If you are asymptomatic, you can often continue daily life as usual—but listening to your body remains key. Over-restriction can be harmful too. Isolation, fear-based avoidance, and eliminating all physical activity may negatively impact both heart health and emotional well-being.

At this time, there are no PLN-specific diet or lifestyle rules. However, general heart-healthy habits, balanced nutrition, regular movement, adequate rest, and stress management, remain important. Following established nutrition and physical activity guidelines can support overall health, alongside individualized medical advice.

The goal isn’t limitation, it’s sustainable, informed living. Always partner with your healthcare team to make decisions that support both your heart and your life.

Please ask any questions to our DM or visit our website at plnfoundationna.com