Some people (but very few) here wonder why we don’t just crowdfund donation$ and then hire our
own POIS researcher instead of using an intermediary like NORD? One answer is that NORD does all the accounting/bookkeeping/$$$ fundraising donor collection, organization and disbursement of funds, a mini-nightmare for a small group like ours. Then they do massive promotion to a huge international database and PR network to
screen for and find
medically-qualified-for-POIS researchers. Then, lending great CREDIBILITY to the process (for donors & researchers alike) with a very well-known and highly respected name in the field of medical research of rare disorders, e.g., NORD.
And to me, one of the most critical factors is having an “oversight” team like NORD’s MAC (see below), virtually impossible to assemble all alone by a small group such as ours.
MAC FAQ
Q. Who evaluates all of the POIS Grant proposals for NORD (our Grant administrator) and who does the final award/selection of our Researcher/PI (Principal Investigator)? And who monitors POIS research progress & sends us periodic updates?
A. NORD's Scientific and Medical Advisory Committee (also known as "MAC") -- does all of the above.
The NORD MAC ( Medical Advisory Committee ) is comprised of physician/researchers who share their experience and expertise on behalf of patients and families affected by POIS. They are:
Marshall Summar, MD, Chair, NORD Strategic Advisory Committee
Division Chief, Genetics and Metabolism
Margaret O’Malley Chair of Molecular Genetics
Children’s National Medical Center
Professor, Pediatrics, George Washington
University School of Medicine and Health Sciences
Frederick Askari, MD, PhD
Associate Professor, Hepatology
Division of Gastroenterology
Director, Wilson Disease Program
University of Michigan Health System
Matthias Baumgartner, Prof Dr med
Associate Professor for Metabolic Diseases
University of Zurich
Head, Division of Metabolics
Children’s Hospital Zurich
Preston W. Campbell, III, MD
President and Chief Executive Officer
Associate Professor of Pediatrics
Johns Hopkins Cystic Fibrosis Center
Harry (Hal) Dietz, MD
Victor A. McKusick Professor of Genetics
and Medicine
Investigator, Howard Hughes Medical Institute
Johns Hopkins University School of Medicine
McKusick-Nathans Institute of Genetic Medicine
Gregory M. Enns, MB, ChB
Associate Professor of Pediatrics (Genetics)
Lucile Packard Children’s Hospital
Associate Professor – Med Center Line,
Pediatrics – Medical Genetics
Member, Child Health Research Institute
Stanford University School of Medicine
Marlene Haffner, MD, MPH
President and CEO
Haffner Associates, LLC
James E. Heubi, MD
Director, Clinical Translational Research Center
Co-Director, Center for Clinical and Translational Science and Training
Associate Dean, Clinical and Translational Research
Professor, Department of Pediatrics
Cincinnati Children’s Hospital Medical Center
James F. Leckman, MD
Neison Harris Professor of Child Psychiatry
Psychiatry, Psychology and Pediatrics
Yale Child Study Center
Yale School of Medicine
Brendan Lee, MD, PhD
Robert and Janice McNair Endowed Chair and Professor in
Molecular and Human Genetics
Professor of Molecular and Human Genetics
Baylor College of Medicine
Investigator, Howard Hughes Medical Institute
James E. Lock, MD
Cardiologist-in-Chief
Boston Children’s Hospital
Alexander S. Nadas Professor of Pediatrics
Harvard Medical School
Mary Jean Sawey, PhD
VP, Medical Director
Scientific Services
TRIO, an FCB Health Network Company
Susan Winter, MD
Clinical Professor, Pediatrics, UCSF
Clinical Geneticist, Genetic Medicine and Metabolism, Valley Children’s Hospital
Doris T. Zallen, PhD
Professor Emerita of Science and Technology
Studies and Humanities
Virginia Tech University
