The POLG Foundation was created by Robert and Julie de Luxembourg. “In our family,” they have reported, “there exists life before July 26, 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 multiple organ dysfunction and failure. Frederik’s particular disease is due to a mutation in the PolG gene.”
The Founders soon learned that mitochondrial diseases, once considered rare, are now believed to affect as many as one in 5000 people globally, “rendering it the second-mostcommonly diagnosed, serious genetic disease after cystic fibrosis.” Distressingly, the Founders also learned that research into treatments and cures for mitochondrial diseases were uncommon and, where it existed, it was often underfunded and conducted in an informational vacuum.
After five years of struggling with the disease within their own family, the Founders imagined an effort to find treatments, and ultimately a cure, for the disease afflicting so many patients and families globally. Given the profound lack of research into and knowledge about PolGrelated mitochondrial diseases, and following extensive consultation with research and clinical advisers, they agreed to create The PolG Foundation to seek a “visionary and innovative approach to diagnose, treat and cure a complex mitochondrial disease.” Their investment in research was further encouraged by recognizing that greater knowledge of PolG may open the door to improved treatments for related diseases including Alzheimer’s, Parkinson’s, diabetes, cardiac issues, depression and some cancers.
Although, at this writing, the Foundation is in its infancy, it has already attracted broad support within the global scientific and medical communities. Luminaries from various fields have offered their time and expertise as members of the Foundation’s Board of Directors, Scientific Advisory Board and friends.
