ALISO VIEJO, Calif. — November 24, 2014 — Global Genes™ announced today the formation of an inaugural leadership team, the Medical and Science Advisory Board, as well as the addition of three new members to their board of directors.
“As Global Genes evolves and expands our strategic influence and reach, we are very excited to be adding insightful leadership to both our board of directors and a new multidisciplinary team of scientific and clinical thought leaders,” said Nicole Boice, Global Genes Founder & CEO. “With the formation of the Medical Scientific Advisory Board, Global Genes will have the resources needed to accelerate our innovation efforts in technology, science, advocacy and research, and achieve our mission to eliminate the challenges of rare disease.”
- Wendy White is the founder of Siren Interactive, a rare disease advertising and marketing agency. Siren’s main focus is to find patients and connect them to appropriate therapies. Wendy’s personal journey with her daughter, which began in 2001, was the impetus for Siren to focus solely on marketing rare disorder therapies. Wendy is also a parent advocate for nail-patella syndrome.
- Matt Wilsey is a Silicon Valley entrepreneur, investor and advisor. Beyond consumer products and services, Matt advocates for and invests in biomedical research, drug development, and genetic sequencing technology. Wilsey is also the founder of the Grace Wilsey Foundation which supports the NGLY1 disorder.
- Brad Margus is the founder of Exigence Neurosciences, a new drug discovery company. In 2013, Margus started Genome Bridge, a non-profit subsidiary of the Broad Institute of Harvard and M.I.T., to build a computational platform for sharing genomic and clinical data. Margus is also founder and volunteer President of the A-T Children’s Project, a non-profit that orchestrates research on a rare, brutal, genetic disease — ataxia telangiectasia or “A-T”–which two of his sons have.
The Medical & Scientific Advisory Board (MSAB) will provide strategic input, insight and expertise to the organization in the key areas of rare disease diagnostics, technology, drug development and potential partnerships related to rare disease science. The MSAB mission, goals and advisory role will be strategically aligned with the Global Genes mission ‘To Eliminate the Challenges of Rare Disease.’
This multidisciplinary board will serve in an advisory capacity to the Global Genes executive leadership team and will convene quarterly to further specific initiatives and work together to broaden the impact of Global Genes by advancing innovation in technology, science, advocacy and research.
The MSAB consists of MDs, PhDs, MBAs, clinicians, geneticists, scientific researchers and professors. This expert team includes:
David Altshuler, MD, PhD Chief Academic Officer, Broad Institute of MIT and Harvard Professor of Genetics and Medicine, Massachusetts General Hospital Harvard Medical School
Beth Anne Baber, PhD, MBA Chairman and Chief Executive Officer, The Nicholas Conor Institute
Hudson Freeze, MD, PhD Professor and Director, Human Genetics Program Sanford Children’s Health Research Center Sanford-‐Burnham Medical Research Institute
Deb Geraghty, PhD, MBA Board of Trustees, Emma Willard School, Consultant
Peter Goodhand Executive Director, Global Alliance for Genomics and Health
Stephen C. Groft, PharmD Senior Advisor to the Director, National Center for Advancing Translational Sciences (NCATs) National Institutes of Health
Ayesha N. Khalid, MD, MBAClinical Instructor, Harvard Medical School, MIT I Sloan School of Management
Harry Leider, MD, MBA, FACPE Chief Medical Officer, Walgreens
C. Jimmy Lin, MD, PhD, MHSPresident,Rare Genomics Institute
Jeanette McCarthy, MPH, PhDAdjunct Associate Professor, Duke University, Visiting Associate Professor UCSF,Editor‐In‐Chief, Genome Magazine
Sharon Moalem, MD, PhD Chief Executive Officer, Recognyz Systems Technology
David Nielsen, MDChief Executive Officer and Executive Vice President, American Academy of Otolaryngology-Head and Neck Surgery
Ethan Perlstein, PhDFounder Perlstein Lab, PBC
Anthony Philippakis, MD, PhDCardiologist, Brigham and Women’s Hospital, Research Scientist, Broad Institute of MIT and Harvard, Venture Partner, Google Ventures
Ian Phillips, PhD, DScCenter for Rare Disease Therapies, Professor, Keck Graduate Institute
Inderpal S. Randhawa, MDAssistant Professor of Clinical Pediatrics, UC Irvine School of Medicine, Assistant Professor of Medicine, UCLA School of Medicine, Miller Children’s Hospital at Long Beach Memorial
Katherine Rauen, MD, MS, PhD Professor and Medical Geneticist, University of California, Davis “RASopathies” Researcher, Presidential Early Career Awardee for Scientists and Engineers. Dr. Rauen also sits on the RASopathies Network Scientific Advisory Board.
Christian Rubio, MBACommunity Director, SERMO
Ryan Taft, PhDDirector of Scientific Research, Illumina, Inc.
Christina Waters, PhD, MBA Chief Executive Officer, RARE Science
Keith Vaux, MD, PhDClinical Chief and Division Director, Medical Genetics, University of California, San Diego School of Medicine
For more information on the Medical and Scientific Advisory Board, please visit www.globalgenes.org/msab/
About Global Genes – Allies in Rare Disease
Global Genes™ is a leading rare disease patient advocacy organization. The group’s mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections to people and resources, and through investment in technologies that will positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.
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