A Single Cure Leads to Many

PolG-related disorders may be rare, but they involve one of the most critical cell structures in the human body, and research has implications for a wide range of illnesses, including Alzheimer’s, Parkinson’s and diabetes, for which we still have no cures.

The mission of the POLG FOUNDATION is to support and accelerate research to find effective treatments and a cure for PolG-related mitochondrial disorders.

Leadership

Frederik

Frederik de Nassau

Co-Founder, Creative Director

At 19, Frederik de Nassau is living with PolG Disorder. With courage and creativity, Frederik rises above the great challenges of his disease to lead the creative design of The POLG FOUNDATION’s digital presence. The mind is the strongest thing we have,” notes Frederik, “We have the potential to do anything we want to. Every second counts.”

Board of Directors

The POLG Foundation’s Board of Directors helps drive the organization’s mission
forward while providing oversight, governance and expertise.

Robert de Luxembourg / Co-Founder, Chair

An international businessman with a deep interest in the arts and humanities, Robert has led the family company, Domaine Clarence Dillon and its subsidiaries, for the past 25 years, currently serving as chairman and CEO. A keen entrepreneur, he has created a number of global businesses, including Clarence Dillon Wines, Quintus SAS, La Cave du Château and the celebrated Parisian restaurant, Le Clarence. He is actively engaged as a chair or as a board member in a good number of companies and foundations, including being a member of an international investment committee. Over the years Robert has been closely involved in a number of capacities with a multitude of nonprofits and charities and advises the Montreux Jazz Festival. He is an Honorary Director of Grapes for Humanity and a Founding Board Member and ex-President of the Cultural Committee of La Cité du Vin, a Bordeaux center, celebrating the global culture of wine.

Julie de Luxembourg / Co-Founder, Vice Chair

Julie de Luxembourg is the mother of three children, the youngest of whom suffers from a rare PolG-related mitochondrial disorder. Her life work has focused on access to education, racial justice, human rights, music and now, seeking treatments and a cure for PolG-related disorders. She is a Human Rights Watch Ambassador, with a current focus on the U.S. criminal justice system; in the world of music, she is on the board of the Montreux Jazz Artists Foundation and has served as a jurist for The Glenn Gould Prize and Montreux Jazz Piano Competitions. She was involved in the creation of École Eden, the first nonprofit educational establishment in Switzerland and she is an advocate for recruitment of underrepresented future educators in the U.S.

Jennifer Adams, M.D. / Director

Dr. Jennifer Adams is an Associate Professor of Medicine at the NYU Grossman School of Medicine (NYUGSoM) where she serves as the Chief of the Section of Empathy within the NYUGSoM Institute for Innovations in Medical Education. She is also an Associate Program Director of the NYUGSoM Internal Medicine Residency, the Program Director of the NYUGSoM Primary Care Residency tract and a preceptor and attending physician at Gouverneur Diagnostic & Treatment Center. Within the medical school, she serves as a coach and advisor in the NYUGSoM Violet Society Program. Jennifer also serves on the Board of Trustees of Bowdoin College and Xavier University of Louisiana and as a board member of Boardman Cottage.

Steven M. Altschuler, M.D. / Director

Dr. Steven Altschuler brings over 20 years of experience building and leading world-class, integrated, translational, value-based healthcare systems and transformational biotechnology companies. He currently serves as managing director of Healthcare Ventures at Ziff Capital Partners and was previously chair of the board of directors at Spark Therapeutics (now part of Roche) for six years, from its founding until it was acquired in 2019. In his role at Ziff Capital Partners, Dr. Altschuler co-leads the firm’s efforts towards investing in and facilitating the startup and development of companies with potentially transformative technologies that emphasize cellular and molecular approaches to human disease. He previously co-founded Spark Therapeutics to develop and commercialize the preclinical and clinical gene therapy programs advanced at Children’s Hospital of Philadelphia (CHOP) and other institutions. He served as Spark’s board chair from its founding through its acquisition in 2019, which included leading the company through a successful transition to a public company and the launch of an approved commercial product, which was the first gene therapy for an inherited disease approved by the U.S. Food and Drug Administration and European Medicines Agency. Dr. Altschuler formerly held chief executive positions at CHOP and University of Miami Health System. He is a member of the board of directors of WW (formerly Weight Watchers International), Orchard Therapeutics, AsclepiX Therapeutics (board chair), Imvax , Platelet BioGenesis (board chair), Affinivax, 89bio (board chair) and Azura Opthalmics (board chair). He is also an independent trustee of the Brigham and Women’s Physicians Organization at Mass General Brigham and Case Western Reserve University. Dr. Altschuler holds a B.A. in mathematics and an M.D. from Case Western Reserve University.

Rémy Best / Director

Rémy Best is one of eight managing partners of the Pictet Group, a management-owned wealth and asset manager headquartered in Geneva, Switzerland with 5’500 employees across 30 offices worldwide. During his 25 years at the firm, he has overseen its two largest businesses and strategic corporate functions and been a key driver of modernization and innovation. Throughout his career, while serving clients, colleagues, and members of the community, Rémy has always focused on achieving positive impact and demonstrating that business can be a force for good. In addition to his role at Pictet, he has supported numerous humanitarian, educational and cultural institutions as a board member and advisor. As part of his current mandates, he is a member of the Assembly of the International Committee of the Red Cross, the governing body of the largest humanitarian network in the world with over 20’000 staff. He is also on the board of INSEAD, one of the world’s leading and largest graduate business schools, and chairs its fundraising campaign involving 45'000 alumni in 176 countries. He is also the Chairman of the Circle of Patrons of the Geneva Opera House and Treasurer of the International Council of Museums Foundation. Prior to joining Pictet, Rémy worked at the global management consultancy McKinsey & Co. He holds a Master in Business Administration from INSEAD (1993), a law degree from the University of Geneva and practiced law in Switzerland.

Francesco De Rubertis, Ph.D. / Director

Dr. Francesco De Rubertis has been a leader in global biotech and life-sciences investments for more than two decades. A co-founder and Partner at Medicxi, he was a Partner at Index Ventures for 19 years, having joined the firm in 1997 to launch its life sciences practice. Francesco currently serves on the boards of various portfolio companies including Rivus Pharmaceuticals, and is Chairman of Centessa Pharmaceuticals. His prior investments include CellZome (acquired by GlaxoSmithKline), GenMab (Copenhagen: GEN.CO), GenSight Biologics (Euronext: SIGHT), Micromet (acquired by Amgen), Minerva Neurosciences (NASDAQ:NERV), Molecular Partners (Swiss:MOLN.SW), PanGenetics (acquired by Abbott), Parallele Biosciences (acquired by Affymetrix), Profibrix (acquired by The Medicines Company), Versartis (NASDAQ:VSAR). Francesco received a B.A. in Genetics and Microbiology from the University of Pavia and a PhD in Molecular Biology from the University of Geneva after which he became a postdoctoral scientist at the Whitehead Institute at M.I.T. A Chartered Financial Analyst, Francesco has served on the main board of the University of Geneva. In November 2017 he was named to the first "Bloomberg 50” as one of the Top 50 entrepreneurs and innovators helping to define Global Business in 2017.

Jörg Duschmale, Ph.D. / Director

An organic chemist by training, Dr. Duschmale completed his Ph.D. thesis at the University of Basel and the ETH Zürich investigating the catalytic properties of short peptides. He then switched his interests to the other natural oligomers when he started his career at Roche Pharmaceutical Research and Early Development within the field of RNA therapeutics, where he was working on the chemical modification of antisense oligonucleotides. His research there contributed to several portfolio projects and resulted in the publication of a peer-reviewed article and the filing of seven patent applications. More recently, he left laboratory work and joined the board of directors of Roche as a representative of the founding families. He has a keen scientific interest in rare diseases and combines a deep understanding of the drug discovery process with a long family tradition in not-for-profit endeavors.

Allyson J. Ocean, M.D. / Director

Dr. Allyson J. Ocean is Associate Professor of Clinical Medicine at Weill Cornell Medical College of Cornell University, medical oncologist and attending physician in gastrointestinal oncology at NewYork-Presbyterian Hospital, and medical oncologist at The Jay Monahan Center for Gastrointestinal Health. Board certified in internal medicine, hematology and medical oncology, Dr. Ocean’s primary interest is in the biology, research, and treatment of gastrointestinal malignancies. She has published numerous peer-reviewed manuscripts, book chapters and abstracts and is an active member of several professional societies, including the American Society of Clinical Oncology and American Association for Cancer Research. Dr. Ocean is currently leading numerous clinical trials investigating radiolabeled antibodies, antibody-drug conjugates, oncolytic viruses and targeted therapies. Dr. Ocean is a leader in the patient advocacy space and has co-founded three non-profit organizations including Michael’s Mission, Inc., to support patients with colorectal cancer, Let’s Win Pancreatic Cancer, a one-of-its-kind platform to connect patients with pancreatic cancer to the best therapies that go beyond standard of care, and Oceans of Blessings, which gifts safe, non-toxic skincare and beauty products to people undergoing cancer therapy. Let’s Win Pancreatic Cancer was awarded the inaugural Biden Cancer Initiative Award in 2018. Dr. Ocean also serves on the board of the Jack and Jill Late Stage Cancer Foundation.

Scientific Advisory Board

Steven M. Altschuler, M.D. / SAB Chair >

Managing Director
Healthcare Ventures at Ziff Capital Partners

Laurence A. Bindoff, M.D., Ph.D. / >

Professor Emeritus
University of Bergen

Francesco De Rubertis, Ph.D., CFA / >

Co-Founder and Partner
Medicxi

Jörg Duschmale, Ph.D. / >

Board of Directors
Roche

Arnold Munnich, M.D., Ph.D. / >

President
Institut IMAGINE

Sir Doug Turnbull, M.D., Ph.D., FRCP, FMedSchi / >

Professor of Neurology
Newcastle University

Team

Cindy Gavin / Founding Organizational Director

Cindy Price Gavin has more than three decades of professional experience in the nonprofit and financial services fields, with particular expertise in building medical nonprofit start-ups into mature organizations. As the Founding Executive Director for Let’s Win! Pancreatic Cancer, Cindy has led its growth from a concept to its current status as the award-winning global leader in patient education about treatment options. Prior to joining Let’s Win, Cindy was founding Executive Director of Michael’s Mission, a charity focused on improving the quality of life and treatment options for patients struggling with colorectal cancer. Cindy began her career as a partner in PricewaterhouseCoopers’ New York Financial Services where she led initiatives in the areas of People, Quality and Corporate Responsibility. Cindy serves on the board of directors of the Ronald McDonald House of New York, the Rodeph Sholom School, the Leadership Council of the East Harlem Tutorial Program and The Basser Center for BRCA Advisory Board at Penn Medicine. She’s been a long-time trustee for the Leukemia and Lymphoma Society (“LLS”), honored for her commitment as a board member, advocate, and champion of LLS.

A. James Heynen / Managing Director

Mr. Heynen had a background in media, education, philanthropy, public service and publishing when he founded The Greystone Group in 1984. His consulting and communications firms, Greystone (which he sold in 2004) and now RTM, have been globally recognized for excellence. Mr. Heynen has served 1,200+ organizations from healthcare and manufacturing to universities and governments, from the World Council of Churches to General Motors and retail giants Sears and Meijer, Inc. He’s directed hundreds of enterprise formations, mergers and acquisitions, reorganizations, conflict resolutions and succession plans. Mr. Heynen’s writings appear in twenty-nine university texts and reference works including Oxford University Press’ Words of a Century: The Top 100 American Speeches, 1900-1999.

Willa Shalit / Director of Communication

Willa Shalit is an artist, author and entrepreneur whose career has focused on communication for social change. She’s brought economic opportunity to women in post-conflict zones and created flagship “purchase with purpose” brands for major US retailers and co-founded V-Day, the nonprofit that's raised and distributed more than $110M (US) to help stop violence against women and girls. She co-founded and serves as Board Chair of the Let’s Win Pancreatic Cancer Foundation, which was the inaugural winner of the Biden Cancer Initiative’s FIERCE Award for “Leadership through Exemplary and Awesome Purpose" (LEAP). She serves on the Board of the Lustgarten Foundation for Pancreatic Cancer and Chairs the Board of IndigenousWays. Ms. Shalit has served as a Special Advisor to the United Nations Development Fund for Women and the United Nations Ethical Fashion Initiative. Her innovative work has been the subject of a PBS television special and has been reported by global media including The New York Times, The International Herald Tribune, Marie Claire magazine and O, The Oprah Magazine.