Our leadership team is up to the task. We have more than three decades of innovation that lead to the creation of ASO technology coupled with a deep commitment to patients. We understand the challenges translating observations into drugs represents. Most importantly, we understand that every day matters, every minute matters to our patients. It is with this sense of urgency and commitment to quality at every step in the process that we can and are making a difference, today.
Founder, Chief Executive Officer and Chairman of the Board
Dr. Stanley Crooke is founder, chairman and chief executive officer of n-Lorem, a nonprofit foundation focused on providing treatments for patients with nano-rare disease patients (1 to 30 patients worldwide), which he initiated in January 2020.
Prior to n- Lorem, Dr. Crooke founded and was Chairman and Chief Executive Officer and Lead Scientist of Ionis Pharmaceuticals. During his tenure at Ionis, he led the scientific development of a new platform for drug discovery, antisense technology and the creation of one of the largest and more advanced development pipelines in the biotechnology industry, and commercialized several antisense drugs including, SPINRAZA® (nusinersen), TEGSEDI™ (inotersen) and others. Early in Dr. Crooke’s career, he led the creation of the first broad anticancer program in the industry at Bristol-Myers, bringing numerous anticancer drugs to the market in the first five years of his career. He then assumed responsibility for worldwide R&D (president) at SmithKline Beckman (now GSK). During his tenure at SKB, Dr. Crooke led the restructuring of R&D and the development of several drugs that were commercialized.
Dr. Crooke has also contemporaneously led a successful academic career becoming a full professor at Baylor College of Medicine and the University of Pennsylvania Medical School where he trained a number of Ph.D. students and won several teaching awards. Dr. Crooke has been an active scientist throughout his career as well.
Dr. Crooke has received a number of awards, most recently, the Indiana University School of Medicine Steven C. Beering Award, the Prix Galien Roy Vagelos Pro Bono Humanum Award, the American Chemical Society’s E.B. Hershberg Award for Important Discoveries in Medicinally Active Substances, the Lifetime Achievement Award presented by the Oligonucleotide Therapeutics Society, the Scrip Lifetime Achievement Award and the 2019 Massry Prize.
Dr. Crooke received his M.D. and Ph.D. degrees and house staff training at Baylor College of Medicine, where he currently serves on the Board of Advisors. In 2021, Dr. Crooke has been named Distinguished Alumnus of both Baylor College of Medicine’s Graduate and Medical schools and named one of the 20 of the most influential biopharma R&D executives by Endpoints News. He has published nearly 600 scientific publications, edited more than 20 books, has numerous patents, and led the development of more than 23 drugs that have been commercialized.
Chief Technical Officer
Dr. Frank Bennett is the chief technical officer of n-Lorem Foundation. He also is a founding member of Ionis Pharmaceuticals and serves as the company’s chief scientific officer. He is responsible for preclinical antisense drug discovery and antisense technology research. Dr. Bennett is also the franchise leader for neurological programs at Ionis. He has been involved in the development of antisense oligonucleotides as therapeutic agents, including research on the application of oligonucleotides for inflammatory, neurodegenerative diseases and cancer, oligonucleotide delivery, pharmacokinetics and medicinal chemistry.
Dr. Bennett is a co-recipient of the 2019 Breakthrough Prize in Life Sciences for his contributions to the discovery and development of SPINRAZA® (nusinersen) and the 2018 Hereditary Disease Foundation’s (HDF) Leslie Gehry Brenner Prize for Innovation in Science for his leadership and continued commitment to developing antisense therapies for Huntington’s disease (HD).
Dr. Bennett has published more than 200 papers in the field of antisense research and development and he is an inventor on more than 175 issued patents.
Prior to joining Ionis, Dr. Bennett was associate senior investigator in the Department of Molecular Pharmacology at SmithKline and French Laboratories, currently, GlaxoSmithKline.
He received his Ph.D. in Pharmacology from Baylor College of Medicine, Houston, Texas and his B.S. degree in Pharmacy from the University of New Mexico, Albuquerque, New Mexico. He performed his postdoctoral research in the Department of Molecular Pharmacology at SmithKline and French Laboratories.
Dr. Bennett serves on the Advisory Board for the Experimental Therapeutics Centre in Singapore and the Hereditary Disease Foundation.
Chief Operating Officer
Chief Medical Officer
Sr. Director of Operations
Kim Butler is the senior director of operations at n-Lorem Foundation. Kim is a broadly experienced administrative assistant who has been employed by Ionis Pharmaceuticals since 2014 . During her tenure with Ionis she has been promoted several times and has assumed substantial managerial responsibilities. Additionally, she is accountable for leading the training of all administrative personnel and leads the management of administrative activities for Ionis. Currently, Kim is the senior administrative assistant to the Chairman and CEO of n-Lorem and has played an instrumental role in the formation of the foundation.
Prior to joining Ionis, Ms. Butler served in senior administrative positions in several organizations and has help found and participated in a number of charitable efforts. She is active in a wide range of civic service groups such as the American Legion and a frequent volunteer committed to serving the needy empathetically.
Dr. Jeff Carroll is a scientific advisor for n-Lorem. Jeff began assisting n-Lorem’s access to treatment committee at a very early stage, given his passion for helping families with rare genetic diseases. This passion emerges from a personal connection – Jeff’s mother died after suffering from Huntington’s Disease, placing her 6 children at 50% risk of developing the disease. In 2003, Jeff learned that he inherited this mutation from his mother, sparking a passion to help understand the disease, and to help hasten the development of novel treatments for all HD patients.
Jeff is now an associate professor in the Department of Neurology at the University of Washington. Jeff’s primary scientific focus is on conducting translational studies in support of “Huntingtin Lowering” approaches to Huntington’s Disease, primarily through the use of antisense oligonucleotides. Jeff’s Ph.D. and postdoctoral studies all involved using mouse models to understand basic mechanisms of HD and preclinical testing of therapeutic interventions in these models. During his Ph.D., he trained with Michael Hayden (UBC) and his postdoctoral studies were conducted under the supervision of Marcy MacDonald (MGH, Harvard Medical School).
Sr. Director of Research
Dr. Tracy Cole is the senior director of research at n-Lorem Foundation. Tracy has expertise in all aspects and stages of drug discovery and development. Most recently at Neurocrine Biosciences, Tracy led internal preclinical efforts to advance AAV gene therapy-based drug discovery. Prior to joining Neurocrine, Tracy was an integral part of Ionis Pharmaceutical’s neuroscience group where she coordinated with clinical, pharmacokinetic, toxicology, in vitro screening, regulatory, legal, and translational medicine groups to bring multiple ASO therapies to the clinic.Tracy received her Ph.D. in neurobiology and behavior at the University of California, Irvine, where she focused on the involvement of inflammation in Alzheimer’s disease, specifically one aspect of the innate immune response called the complement cascade. Tracy has contributed to nine clinical development compound patents and authored/co-authored over ten top-tier journal publications.
Sr. Director of Pre-clinical Development
Sr. Director of Clinical Development
Dr. Laurence Mignon brings more than 20 years of experience to n-lorem as an seasoned academic researcher and clinical developer with a passion for rare diseases. Most recently, Laurence worked at Ionis Pharmaceuticals both in the Translational Medicine group and the Neurology Franchise Clinical Development group. In those roles, she implemented a novel genomic study to better understand genotype-phenotype associations and disease pathways, initiated the first clinical study in myotonic dystrophy type 1 and was a key member of the clinical team that brought SPINRAZA® (nusinersen), a disease-modifying therapy for patients with spinal muscular atrophy, to the market. Prior to Ionis, Laurence worked at Orexigen Therapeutics on the development of an obesity medication and at the Neuroscience Education Institute developing Continuing Medical Education material aimed at deconstructing the mechanism of action of psychiatric medications for psychiatrists, primary care physicians, and registered nurses. Laurence’s broad and diverse experience allows her to be strategically creative in her approach to deal with uncharted challenges.Laurence received her PhD in Pharmacology and Experimental Therapeutics from Loyola University Chicago and was a researcher for 6 years in the Department of Neurology at UCLA in the laboratory of Marie-Françoise Chesselet, studying properties of muscle-derived stem cells and the role of the serotonin pathway in Parkinson’s disease.
Sr. Director, Medical Geneticist
Dr. Cedrik Ngongang is the senior director medical geneticist at n-Lorem Foundation. Prior to joining n-Lorem, Dr. Ngongang was a scientist at the National Human Genome Research Institute, National Institutes of Health.
Dr. Ngongang’s clinical and research experience in genetic medicine spans various aspects of the diagnostics and management of rare disorders, including clinical assessment of genomic variants, elucidation of the genetic basis of Mendelian phenotypes in individuals from ancestrally diverse backgrounds, and application of machine learning approaches to the clinical and genomic diagnosis.
He received his M.D. from the University of Yaoundé 1 Faculty of Medicine, and his Master of Medicine in medical genetics from the University of Cape Town. He completed his postdoctoral training in molecular genetics at the National Institutes of Health, following his board-certification in clinical genetics in South Africa.
Sr. Director of Communications and Donor Relations
Prior to joining Ionis, Amy worked at a public relations agency, where she managed and led communications for a range of companies across the biotechnology industry, and built long-standing relationships with key media, investors and analysts.Amy received her Ph.D. in chemistry from The Scripps Research Institute, where she studied the selective binding of transcription factors to DNA.
Board of Directors
Founder, Chief Executive Officer and Chairman of the Board
Chief Technical Officer
Global Head of Corporate & Investment Bank, and President of Barclays Bank PLC
Founder of n-Lorem
Killam Professor of Medical Genetics at University of British Columbia
Dr. Michael Hayden is a Killam Professor at the University of British Columbia and the director of the Translational Laboratory in Genetic Medicine at the National University of Singapore and the Agency for Science, Technology and Research (A*STAR). From 2012 to 2017, he served as president of Global R&D and chief scientific officer at Teva Pharmaceutical Industries Ltd. Dr. Hayden built and transformed research and development at Teva to become a highly productive research engine and was instrumental in the approval of approximately 30 new products.
Dr. Hayden has founded three biotechnology companies and has been the recipient of numerous prestigious honors and awards including being inducted into the Canadian Medical Hall of Fame, receiving the July 2012 Diamond Jubilee Medal, on behalf of HRH Queen Elisabeth II and the Margolese National Brain Disorder Prize, awarded to Canadians who have made outstanding contributions to the treatment, amelioration, or cure of brain diseases. He’s also received the Canada Gairdner Wightman award for his outstanding leadership in medicine and medical science as a physician-scientist. Dr. Hayden was awarded the Order of Canada, the Order of British Columbia, named Canada’s Health Researcher of the Year by Canadian Institutes of Health Research, and has received the Prix Galien for his contribution to Canadian pharmaceutical research. Most recently, Dr. Hayden was named one of the 50 Canadians born in the 20th century who have changed the world.
Senior Physician & Head of the Department of Medicine at Brigham & Women’s Hospital, Harvard Medical School, and Executive Committee Member of UDN
Dr. Joseph Loscalzo is Hersey Professor of the Theory and Practice of Medicine at Harvard Medical School, chairman of the Department of Medicine, and physician-in-chief at Brigham and Women’s Hospital. Dr. Loscalzo received his A.B. degree, summa cum laude, his Ph.D. in biochemistry, and his M.D. from the University of Pennsylvania. His clinical training was completed at Brigham and Women’s Hospital and Harvard Medical School, where he served as Resident and Chief Resident in medicine and Fellow in cardiovascular medicine.
Post-training, Dr. Loscalzo joined the Harvard faculty and staff at Brigham and Women’s Hospital in 1984. He rose to the rank of associate professor of Medicine, Chief of Cardiology at the West Roxbury Veterans Administration Medical Center, and director of the Center for Research in Thrombolysis at Brigham and Women’s Hospital. He joined the faculty of Boston University in 1994, first as Chief of Cardiology and, in 1997, Wade Professor and Chair of Medicine, Professor of Biochemistry, and Director of the Whitaker Cardiovascular Institute. He returned to Harvard and Brigham and Women’s Hospital in 2005. He currently serves on the board of directors of Leap Therapeutics, Inc., a publicly held biopharmaceutical company, and is an executive committee member of the UDN.
Executive Director of The Wolverine Foundation
Board of Directors
Director Hyman, Phelps & McNamara, P.C.
Frank J. Sasinowski is director of Hyman, Phelps & McNamara, P.C., and an Adjunct Professor of Neurology at the University of Rochester School of Medicine. He brings more than 20 years of board experience at prestigious institutions, including the Alliance for Regenerative Medicine (ARM) Foundation for Cell and Gene Medicine, National Organization for Rare Disorders (NORD), EveryLife Foundation for Rare Diseases, the IndoUSrare patient organization, the United States Pharmacopeia (USP) and various notable biotechnology companies.
After joining the U.S. Food and Drug Administration (FDA) in 1983 as regulatory counsel in the Center for Drugs and Biologics, Sasinowski became a key player in the implementation of foundational legislation such as the 1983 Orphan Drug Act and 1984 Hatch-Waxman Act. He worked with the FDA for nearly half a decade before leaving his position as the Deputy Director of health policy in the Commissioner’s office and joining Hyman, Phelps & McNamara, P.C. Sasinowski used his experience working in the drug regulatory process to help secure FDA approval for hundreds of new drugs, including more than 100 new molecular entities – often for serious and rare diseases.
Sasinowski has been widely recognized for his expertise by the life sciences sector, patient advocacy organizations and notable world leaders, including former President Barack Obama, who recognized his contributions to the President’s Council of Advisors on Science and Technology (PCAST) report in 2012. He is the recipient of numerous awards, including NORD’s first-ever Lifetime Achievement Award, as well as the FDA’s Award of Merit and NORD’s Humanitarian Award, where he was honored for his work benefiting the rare disease community. Most recently, Sasinowski received Pope Francis’ 2021 Pontifical Hero Award for Inspiration as recognition for his leadership, advocacy and unwavering dedication to patients living with rare disease.
Associate Professor of Neurology in the Neuromuscular Division at Columbia University, Vagelos College of Physicians and Surgeons
Dr. Neil Shneider serves as the Claire Tow Associate Professor of Motor Neuron Disorders and the Director of the Eleanor and Lou Gehrig ALS Center at Columbia University. He is an investigator in the Center for Motor Neuron Biology and Disease where his lab focuses on the study of models and mechanisms of ALS and the discovery and development of novel therapeutics for ALS and related disorders. Dr. Shneider worked with Ionis Pharmaceuticals to develop ION363 (Jacifusen), an anti-sense oligonucleotide (ASO) for ALS patients with rare mutations in the FUsed in Sarcoma (FUS) gene. Dr. Shneider is a graduate of Harvard College and earned his M.D. and Ph.D. degrees at the Columbia University College of Physicians and Surgeons.
In partnership with n-Lorem and Columbia University, Dr. Shneider founded Silence ALS, an initiative to develop ASOs for ALS patients with nano-rare, pathogenic mutations in ALS genes. Dr. Shneider was co-chair of the Translating Fundamental Research into Potential ALS Therapies Working Group for the NIH ALS Strategic Planning Workshop.
Founder and CEO of J. Wood Capital Advisors
University of California San Diego Professor, Dept. of Cellular and Molecular Medicine
Every patient deserves expert advice about treatment. At n-Lorem, we have a number of committees that provide expert advice across all key steps.
The Access to Treatment Committee reviews applications submitted by research physicians to treat genetically confirmed nano-rare disease patients.
The Study Treatment and Assessment Review Committee provides n-Lorem and the patient’s physicians guidance on the development of treatment goals and clinical outcome assessments for n-Lorem’s diverse patient population.
We cannot do
Together we are changing the world—
one patient at a time
We hope that you join us on this journey to discover, develop and provide individualized antisense medicines for free for life for nano-rare patients. The ultimate personalized medicine approach – for free, for life.
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