PRINCE ROBERT DE LUXEMBOURG
As my family and colleagues can attest, one of the maxims that I often quote and that I therefore try to live by is: every challenge brings opportunity. In July 2016, when my wife and I received the diagnosis for Frederik’s condition, a rare, degenerative PolGrelated mitochondrial disease, we were absolutely devastated. Shocked, scared and desperate, like so many families around the world who are suddenly faced with caring for a sick child or a loved one. In that very moment, there was no silver lining, no sense of opportunity. Like so many parents who have lost a child or are caring for a sick child, we felt wholly unequipped to handle this situation.
My wife is the daughter of a surgeon and professor. As such, Julie has always had tremendous esteem for the medical community. Her father had always been a great support and resource for us but now, suddenly, we were out of our depth. On the very day that we learned of Frederik’s diagnosis, we reached out to two good friends (both doctors) who happened to be nearby. They appeared by our sides immediately to listen and to discuss possible next steps. This was neither the first nor the last time that we would discover the deep empathy and generosity of the amazing medical community; clinicians, nurses and all of those people who have followed this vocation to bring succour to their fellow man.
By her nature, my wife is blessed with natural drive and abundant energy, but now faced with Frederik’s illness and an extraordinary resolve to find answers, once past the initial shock, her force took on a whole new level. Within 48 hours, we were able to reach out to a number of world experts, and within days we were on a plane headed to Ohio to meet with one of the top specialists in the mitochondrial world.
The next five years were made up of continuous care, surgeries for dear Frederik, and of course a frenetic search for answers, therapies and a cure. We attended conferences and seminars, met with foundations, biotech start-ups, funds, big pharma, clinicians, researchers and laboratories all around the globe.
Once we were able to stabilise Frederik and made it beyond some of his first surgeries, we came up for some air. We realised that unwittingly we had created a virtual world focused resolutely on finding a cure for patients suffering from PolG. We were a speck at the heart of this international web. We wanted to help others and have them benefit from our experience. This is, in short, is how The PolG Foundation was born.
When our youngest son, Frederik was a baby and a young child, everyone always remarked on what a cheerful demeanour he had. He remains an intensely social, wise and insightful being. Other characteristics of his have always been his perseverance, focus and strong will. How all of these qualities have been challenged over the years! How very proud we are of his resolve and drive…and his creativity. I certainly do not wish to sugar-coat the reality of his existence here. Like so many others in his situation, Frederik lives through some exceedingly challenging moments. These are recurrent, and to be expected given his circumstances, and yet he offers so much to all of those people that surround him, not least of whom to his siblings and parents! As the Creative Director of The PolG Foundation, Frederik has created our foundation logo, look and identity (featured in this catalogue). As an extension of this, he has come up with a design for a “MITO” clothing line that we will be selling to raise awareness of his disease and funds for the Foundation. This creative outlet, and his collaboration with his friends at RTM, have been a true gift for Frederik and we trust that this will bring pleasure to the folks that will be acquiring and sporting the clothes This was the case for so many of his friends who showed up to model them! Shout out to our Mito models!
One of the gifts of our circumstance is that we have met some of the most remarkable people. Carers, teachers, friends, even total strangers, have come out of the woodwork and surprised us with their kindness, warmth and generosity. We call these people our angels….and there have been many that have touched us deeply.
We had absolutely no intention of making our story public, but with the creation of The PolG Foundation, we realised that in this moment we might be able to provide a voice and a face among millions to represent others who are sharing Frederik’s and our family’s plight. There is nothing special about us. We share the same hospital corridor, the same medical challenges, the same fears and the same hopes as all of these families do. Nevertheless, with the help of our supporters and The PolG Foundation, we can bring significant means and a sense of urgency to this space. We have already built a good number of bridges and opened up new international lines of communication. With the creation of this US Public Charity, we will work relentlessly to bring a greater awareness to Mitochondrial Diseases and specifically to PolG. We will seek to discover desperately needed therapies and cures for the patients suffering from this devastating disease.
Thankfully, a good number of non-profit foundations already exist, which offer support and information resources for patients, families and carers. Organisations such as the UMDF, MitoAction, Mitocon, The Lily Foundation, MitoCanada, to name just a few, will at times foster both cutting edge research while also providing patient and family support. They have been a lifeline for so many of us and we would like to extend our deepest gratitude to them here. This has also been the case for many other similar research foundations focused on other diseases who are such an important inspiration to us. Their stories, examples and successes drive us forward.
While also working closely with such charities, our Mission is nonetheless resolutely focused on finding therapies and a cure for PolG-related mitochondrial diseases. You may find detailed information on our website at: www.polgfoundation.org Here you will also discover some of the projects that The PolG Foundation is involved with and supporting. The partner entities listed here are only as good as the exceptional people that make up their teams. We feel honoured to know them and to participate in frequent exchanges, briefing us on their challenges and ultimately their progress.
We have been joined in our efforts by an outstanding Foundation Board and Scientific Advisory Board of volunteers, who help to guide us in our common mission. We could not do this without them. We are also aided by the RTM group and their team. We receive a lot of pro-bono help in different sectors (and yes, we will request more from so many generous people in the future).
Sotheby’s has been a wonderful partner in putting together this auction. The wine department has spent weeks combing over every case and bottle in my cellar. They will describe these in an impartial manner. I will only state here that I never had any intention of selling these bottles and formats. Whatever would not have been enjoyed with family and friends, I would have left for the young generation to enjoy. When I first entertained the idea of emptying out my cellar in this rather public fashion, I of course started by approaching my wife and children, to ask them if they agreed with this proposition. There was not a minute of hesitation from them….and thus we were off to the races! Soon thereafter, we were joined by other members of my family and our family company, who generously supported this effort in a substantial manner. My colleagues in Bordeaux got to work, cataloguing, verifying, re-conditioning (when necessary), packing and (post Sotheby’s verification) shipping.
Then came the cherry (or in this case the grape) on the cake: Our family company is a member of Primum Familiae Vini, an organisation that represents 12 of the finest wine-making families in the world. All of these families pitched in with their own extraordinary donations. In parallel, some of the very finest wine producers in France, heard about our sale and donated some truly exceptional and thus hugely valuable lots to our sale! These donations were joined by those of some individual wine collectors with even more extraordinary bottles. Thanks to all of their generosity, we have now succeeded in putting together one of the very finest collections of wine that Sotheby’s has ever brought to the auction market. We are so deeply moved by the gesture and generosity of these donors! These hugely distinguished wine producers are at times offering a singular rare bottle from their cellar that has never before been offered at auction or elsewhere! As is the case for my personal cellar, they have donated extraordinary priceless offerings of large formats most likely never to be seen again! Have you seen the lineup of those Imperials?! On behalf of all of the patients and families affected by this disease, and as Chairman of the The PolG Foundation, I once again extend our most heartfelt gratitude to them! They have made this a truly historic sale.
Any bidders who are lucky enough to win one (or a number) of these lots will be certain to know that they will enjoy some of the very finest and rarest wines in the world, while also supporting a cause that will ultimately help all of us as we come to benefit from an acceleration in mitochondrial research and thereby a focus on better understanding the powerhouse of our cells. With your help, we will face this challenge and aim to seize the opportunity of uncovering a cure for PolG!
Prince Robert de Luxembourg
