Our Story
The PolG Foundation story starts, as is often the case, with the journey of one family and, more particularly, one young man, Frederik. Having faced fear, sadness and grief, the family, inspired by Frederik's example of sheer determination, perseverance and his naturally cheerful disposition, has set out to transform hardship into deep resolve and thereby find a cure for a devastating disease.
As stated by Julie and her husband, Robert: "In our family, there exists life before July 26th, 2016 and life after. On that date, our then-14-year-old son, Frederik, was diagnosed with a mitochondrial disease, a genetic disorder that robs the body’s cells of energy, in turn causing organ dysfunction and failure. Frederik’s particular disease is due to two mutations of his PolG gene. It is as if Frederik has a faulty battery that never fully recharges and is in a constant state of depletion."
Of all of the mitochondrial diseases, the adolescent onset of PolG disorders is among the cruelest. As an adolescent, when Frederik and others like him, should be riding the exciting hormonal rollercoaster of teenage life, among a myriad of other challenges, they are instead facing the possibility of losing their ability to walk, eat and see. The worst thing is that they are informed that there are currently no effective treatments and no cure.
"After years of intense efforts just to just keep Frederik alive, a moment arrived when we were finally able to take a deep breath and look out at the horizon. We decided to concentrate all of our efforts on finding treatments and ultimately a cure, for Frederik and for others like him who suffer from PolG disorders. We, along with Frederik, created The PolG Foundation with the singular goal of finding that cure."
The POLG Foundation story starts, as is often the case, with the journey of one family and, more particularly, one young man, Frederik. Having faced fear, sadness and grief, the family, inspired by Frederik's example of sheer determination, perseverance and his naturally cheerful disposition, has set out to transform hardship into deep resolve and thereby find a cure for a devastating disease.
As stated by Julie and her husband, Robert: "In our family, there exists life before July 26th, 2016 and life after. On that date, our then-14-year-old son, Frederik, was diagnosed with a mitochondrial disease, a genetic disorder that robs the body’s cells of energy, in turn causing organ dysfunction and failure. Frederik’s particular disease is due to two mutations of his PolG gene. It is as if Frederik has a faulty battery that never fully recharges and is in a constant state of depletion."
Of all of the mitochondrial diseases, the adolescent onset of PolG disorders is among the cruelest. As an adolescent, when Frederik and others like him, should be riding the exciting hormonal rollercoaster of teenage life, among a myriad of other challenges, they are instead facing the possibility of losing their ability to walk, eat and see. The worst thing is that they are informed that there are currently no effective treatments and no cure.
"After years of intense efforts just to just keep Frederik alive, a moment arrived when we were finally able to take a deep breath and look out at the horizon. We decided to concentrate all of our efforts on finding treatments and ultimately a cure, for Frederik and for others like him who suffer from PolG disorders. We, along with Frederik, created The POLG Foundation with the singular goal of finding that cure."
“The reason why I wanted to start this foundation was to help other kids with MITO."
–Frederik
“The reason why I wanted to start this foundation was to help other kids with MITO."
–Frederik
In May of 2021, Frederik started his work as the creative director for The PolG Foundation. He has designed our website, logo and overall look; overseeing our social media platform; and has created a clothing line called MITO, with the aim of raising awareness about mitochondrial disease and funds for the Foundation’s efforts. These exciting creative endeavors and the work of The PolG Foundation have given Frederik a new lease on life and a renewed sense of hope. Frederik’s overwhelming desire is ultimately to help others like him, who are also facing these significant challenges whilst living with “MITO.”
“Over the last eight years, while navigating very demanding challenges with Frederik, we have been blessed by so many extraordinary experiences. We are overwhelmed by the kindness and generosity of the human spirit. It fills us with both awe and a profound sense of gratitude. We have been deeply touched by people’s openness and desire to help. As parents of a courageous child, we have been afforded access to some of the brightest minds in the world at a time when rapid innovation in medicine and biotechnology makes everything seem possible. With your help and that of others, we will create a unique international community which will enable us, together, to discover a cure for PolG, thereby helping countless people and other families like ours!”
Our Mission
The mission of The POLG Foundation is to support and accelerate research to find effective treatments and a cure for PolG mitochondrial disorders.
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