With Frederik - the Berlin Marathon for the POLG Foundation

Mansour Shakarchi is organizing this fundraiser to benefit The PolG Foundation Inc..

Tax deductible

For those Mito warriors living with a POLG mutation, every day can feel like running a marathon. In honour of our late brother-in-law, our superhero Frederik, we have decided to run one ourselves to raise awareness and funding for the POLG Foundation.

POLG disease is a cruel genetic condition that robs the body of its ability to generate energy, turning everyday tasks like walking, eating, or moving your arms into exhausting feats. It’s a battle most of us can’t see, but one that takes immense strength every single day. POLG gradually shuts down the body’s ability to function, it indiscriminately targets organs, slowly dimming the light within until switching it off. As of today, there is no cure.

Frederik faced it all with courage, humour and grace. He ran his race with more strength than most of us will ever know. Frederik, our brother-in-law, best friend, and superhero, left us on March 1st. During his fight, he created the POLG Foundation and now, we are lacing up our shoes to run in his name and support the research that could one day give Mito warriors the power they deserve.

About the POLG Foundation https://polgfoundation.org/ :

POLG disease is estimated to affect around 1 in 10,000 people1. Due to its complexity, rarity and terminal nature, the exact number of affected population is difficult to ascertain. This also means there is very little enthusiasm to fund research let alone investment for drug development.

Frederik set out to change that. He founded the POLG Foundation to support and accelerate research to find effective treatments and a cure for POLG mitochondrial disorders. Frederik, through art, public outreach, and scientific research, wanted to ensure that no individual ever needs to suffer in the manner he did; and today it is our mission to carry on his legacy and his fight.

About us: We, Amr and Mansour, are not runners. But over the years have learned a lot from Frederik, including that through discipline, hard-work, and a bit of humour, you can achieve anything you set your mind to. We have therefore decided to tackle the major marathons, and running the Berlin Marathon on 21st September is the first leg of the journey.

Supporting the POLG Foundation: Frederik wanted to raise awareness and drive research through his foundation, clothing line and art. Please carry his legacy by spreading awareness: sharing this page, sharing the Foundation’s mission, or talking about it with friends and strangers. Medical research is unfortunately costly, and work towards a cure is therefore only possible thanks to your generous contributions, no matter the size. We thank you in advance for all your support.

Sub 4-hour challenge! Want to give us a challenge? Pledge a donation if either of us, or double it if both, run the marathon sub 4-hours. As mentioned, both of us are not runners, and so we have already been challenged by 3 supporters to break the 4-hour mark. If you want to join this challenge – please email contact us to confirm your pledge if we break the benchmark!

The POLG Foundation Film: to learn more about Frederik's journey and the foundation, please watch the film below