NORD Announces Two New Board Members

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National Organization for Rare Disorders (NORD)

Dec 20, 2019, 12:03 ET

WASHINGTON, Dec. 20, 2019 /PRNewswire/ -- The National Organization for Rare Disorders (NORD)^®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, announces the appointment of two new members to its Board of Directors, effective immediately.

Joining the Board of Directors are Susan A. Berry, MD and Shafali Spurling Jeste, MD. "Our newest Board members both embody the spirit of service and dedication central to NORD's mission," said Peter L. Saltonstall, President and CEO of NORD. "We are excited to have them on board as we continue the fight to improve the lives of Americans with rare diseases."

Susan A. Berry, MD is Division Director for Genetics and Metabolism in the Department of Pediatrics at the University of Minnesota. She attended Rice University, where she received her degree in Biochemistry, and the University of Kansas for her Doctor of Medicine degree. She has been at the University of Minnesota since 1978, where she completed her residency in Pediatrics and was a fellow in Medical Genetics. She joined the staff of the department in 1984 and is currently a professor in the departments of Pediatrics, Ophthalmology and Genetics, Cell Biology, and Development. She is a member of the Board of Directors for the Society for Inherited Metabolic Disorders, Co-Chair of the Steering Committee for the Newborn Screening Translational Research Network, a member of the Council on Genetics for the American Academy of Pediatrics and a member of the Minnesota Department of Health Newborn Screening Advisory Committee. She is a current member of the federal Advisory Committee on Heritable Disorders in Newborns and Children, a fellow of the American Academy of Pediatrics and of the American College of Medical Genetics, and is also board-certified by the American Board of Pediatrics and the American Board of Medical Genetics. As a nationally recognized geneticist and expert in inborn errors of metabolism, Dr. Berry sees both child and adult patients for genetic consultation at University of Minnesota Physicians Pediatric Specialty Clinic, and attends the Pediatric and Adult Metabolic Clinics, providing care for children and adults with inborn errors of metabolism. She also offers her expertise for inpatient consultation and care. Dr. Berry's research focuses on long-term follow up for newborn-screened conditions.

Shafali Spurling Jeste, MD is Associate Professor in Psychiatry, Pediatrics and Neurology at the David Geffen School of Medicine at UCLA. She received a Bachelor of Arts in Philosophy at Yale University and then earned her medical degree from Harvard Medical School, after which she completed a child neurology residency at Boston Children's Hospital. Dr. Jeste is a behavioral child neurologist specializing in autism and related neurodevelopmental disorders (NDDs). Her research is focused on improving efforts in precision health for neurodevelopmental conditions, through the development of brain-based biomarkers that can improve early prediction, risk stratification and outcome monitoring in clinical trials. Within this framework, she has been investigating and treating many infants and children with genetic syndromes associated with NDDs, and she developed and directs a multidisciplinary clinic called Care and Research in Neurogenetics (CARING) for patients with syndromic NDDs. She is the principal investigator of several studies, including early development and intervention for infants with tuberous sclerosis complex and the UCLA Autism Center of Excellence study of high-risk infant siblings. Dr. Jeste serves as the UCLA site director for a multisite National Institutes of Health Autism Biomarkers Consortium for Clinical Trials research study. Clinically, she evaluates and treats patients with ASD and neurological comorbidities, and directs the UCLA Care and Research in Neurogenetics Clinic (CARING Clinic). Dr. Jeste has published more than 65 peer-reviewed articles in high impact journals and serves on the board of directors for the American Brain Foundation and International Society for Autism Research. For her research in NDDs, she was recently awarded the 2019 Presidential Early Career Award for Scientists and Engineers (PECASE).

NORD extends its deep appreciation for their commitment and leadership to Vicki McCarrell, president of the Moebius Syndrome Foundation, and Sheldon Schuster, PhD, president of Keck Graduate Institute, who have completed their final terms on the Board.

About the National Organization for Rare Disorders (NORD)®

The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the more than 7,000 rare diseases, of which approximately 90% are still without an FDA-approved treatment or therapy. Rare diseases affect over 25 million Americans. More than half of those affected are children.

NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research and providing patient and family services for those who need them most. NORD is made strong together with close to 300 disease-specific member organizations and their communities and collaborates with many other organizations on specific causes of importance to the rare disease patient community.

SOURCE National Organization for Rare Disorders (NORD)