Accomplished leader involved in helping secure FDA approvals for over 100 new medicines joins n-Lorem Foundation to aid in its mission to provide individualized therapies to the ultra-rare disease community
Former regulatory counsel for FDA brings important regulatory, legislative and patient advocacy expertise to n-Lorem’s Board of Directors
SAN DIEGO, Calif., May 17, 2021 (Business Wire) — n-Lorem Foundation, a nonprofit organization providing the ultra-rare disease patients with free, lifetime supplies of individualized RNA-targeted medicines, today announced the newest addition to its Board of Directors – Frank Sasinowski, J.D., M.P.H., M.S.
Sasinowski joins n-Lorem with 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 Pharmacopiea (USP) and various notable biotechnology companies. Currently, he serves a Director of Hyman, Phelps & McNamara, P.C., and an Adjunct Professor of Neurology at the University of Rochester School of Medicine.
“Frank Sasinowski brings significant expertise to n-Lorem in regulatory policy and patient advocacy, having played invaluable roles in U.S. drug approvals for over 100 new medicines, including many for rare medical conditions,” said Dr. Stanley T. Crooke, Founder, CEO and Chairman, n-Lorem Foundation. “We are honored to welcome Frank to our team at n-Lorem, where his guidance will be critical in helping propel personalized antisense medicines into the hands of patients and families who are in desperate need of hope and rapid treatment.”
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.
“n-Lorem is blazing new ground never thought possible in efforts to help patients with ultra-rare diseases. I am honored to join their efforts to help guide this one-of-a-kind non-profit organization that is dedicated in its mission to provide personalized antisense therapies to treat a vast group of patients that have too long been overlooked and underserved,” said Sasinowski. “n-Lorem’s charitable model is first-in-class, and I look forward to offering my experience in regulatory policy and patient advocacy to help the foundation accomplish what it set out to do – provide hope and treatment to more patients.”
Learn more about n-Lorem’s mission at www.nlorem.org, and please consider giving to n-Lorem to bring hope, possibility and treatment options to these desperate patients and families.
- Watch: n-Lorem Foundation Delivers Hope and Treatment for Patient with Ultra-Rare Disease
- Watch: n-Lorem Foundation: Creating a Better Future for Ultra-Rare, One Patient at a Time
- Watch: n-Lorem Foundation’s 1st year of Progress
n-Lorem Foundation is a non-profit organization established to apply the efficiency, versatility and specificity of antisense technology to charitably provide experimental antisense oligonucleotide (ASO) medicines to treat patients with ultra-rare diseases (1 to 30 patients) that are the result of a single genetic defect unique to only one or very few individuals. ASOs are short strands of modified DNA that can specifically target the transcripts of a defective gene to correct the abnormality. The advantage of experimental ASO medicines is that they can be developed rapidly, inexpensively and are highly specific. n-Lorem was founded by Stanley T. Crooke, M.D., Ph.D., former chairman and CEO, and current executive chairman of the board of Ionis Pharmaceuticals, who founded Ionis Pharmaceuticals in 1989 and, through his vision and leadership, established the company as the leader in RNA-targeted therapeutics. Follow us on Twitter, Facebook, LinkedIn and YouTube.
Tracy Johnson, Executive Director