Peter Glijnis is on a mission. Not to discover a new planet or to find a new species, but instead to find carriers of the minuscule PLN R14del gene mutation that effects only people of Dutch Friesland heritage. The mutation causes heart arrhythmia disorders and heart failure. Glijnis has been instrumental in tracing the mutation back 700 years to the Friesland region of the Netherlands.
A native of Friesland who suffered from PLN cardiomyopathy, Glijnis visited Grand Rapids late last year to raise awareness about PLN within the large Dutch community in West Michigan, connect with scientists who might be interested in researching PLN, and connect with people who might be able to help solve this problem through testing or donations.
Glijnis started his career as a mechanical engineer, eventually founding a company that cut steel into three-dimensional shapes. At age 42, he had just broken ground on a new building in the Netherlands. Two days later, while in Singapore, his heart went into arrhythmia and he had to be defibrillated 40 times.
“Two days before, I thought I was a businessman walking on clouds,” said Glijnis. “Then my life totally changed. I was wondering whether I’d see my kids grow up.”
No one knew about PLN back in 2008 when he had that first cardiac event. In 2011, scientists discovered the mutation but didn’t have any treatment for it. In 2012, Glijnis had a heart transplant and, after selling his business, spent a year getting back to normal. He also started the PLN Foundation, a non-profit dedicated to furthering research into PLN and bringing together carriers of the disease.
“I then wondered what to do. But life was given to me, so I made it my mission to help prevent other people with PLN having to go through this,” said Glijnis.
In layperson terms, PLN is a protein with the 14th amino acid missing. It is carried in some people of Friesland descent, with children of carriers having a 50 percent chance of also carrying the mutation. It affects men and women equally, and pregnancy is not a trigger. Even as a carrier, there is not a 100-percent chance the disease will develop.
For Glijnes, now 63, one of his three children is a carrier. “She is my ultimate driving force,” he said.
Glijnis and his team run the PLN Foundation and its many outreaches and research efforts, as well as PLaN Therapeutics, started in 2021, a for-profit biotech company focused on bringing affordable treatments to those with PLN. Profits are funneled back to the foundation for more research and development projects. There is now a PLN biobank to collect blood samples for research, a PLN lab to process the blood, and even a PLN blood bus to collect fresh samples for the biobank.
“My goal is to stimulate and motivate the world—science, pharma, technology—to find cures and treatments for PLN, a disease called by a gene mutation,” said Glijnis, who moved from big business to searching for a cure for one small gene mutation. “How beautiful to change from economic entrepreneurship to social entrepreneurship. My work is a mission.”
Might you have PLN Cardiomyopathy?
- You are of Dutch/Friesland descent
- Your family has a history of cardiac events
- Family members have experienced early death from heart events
- You have arrhythmia or heart failure
- See a cardiologist for free testing through the PLN Foundation
For more information:
www.geneticcardiomyopathy.org/get-tested
Check with your cardiologist for family practitioner if you have questions or would like testing, or contact Corewell Health Grand Rapids Medical Genetics at 25 Michigan St. NE, Suite 2100, 616-391-2700. Visit corewellhealth.org/locations/LOC0000193450/corewell-health-grand-rapids-hospitals-medical-genetics-25-michigan-st-ne
