Staff Profiles

We would like to introduce to you the people who work behind the scenes to manage and protect your data, as well as make sure researchers put it to good use. We also want you to know who will be answering your emails when you reach out with questions.

Megan O’Boyle

Primary Investigator (PI) of the PMSIR and Mom of Shannon

Megan is the PI for the PMSIR, and as such serves as the head of all PMSIR related projects and changes. As a PMS parent, Megan is dedicated to making sure that the best interest of the PMS families and community is always the first and foremost priority. She provides a parent’s view and perspective to the PMSIR team and on all projects.  She also serves on the PMS Foundation’s Research Support Committee.

Megan, her husband Michael, and their 3 children: Kevin, Sean and Shannon (14-year-old with PMS) live in Arlington, Virginia. Their proximity to Washington, DC has enabled Megan to attend several research and advocacy events at the National Institutes of Health (NIH), the Food & Drug Administration (FDA), and the US Congress. Through her advocacy over the past four years, Megan has been able to network with several other disease, advocacy, and research organizations to learn the most efficient and best practices in advocacy and research.

Liz Horn, PhD, MBI

Co-PI and Network Director

Liz first met Megan at a registry training in 2010, and has served as an advisor to the registry until she became the Network Director in 2014. As Network Director, Liz drives, coordinates and oversees all PMS_DN related projects, and supervises registry team. For eleven years, she has worked with advocacy organizations to develop collaborations and implement research initiatives. She was part of the team that created the infrastructure for the Genetic Alliance Registry & BioBank and served as director from 2008-2012. She earned her doctorate in Molecular Pharmacology and Cancer Therapeutics from SUNY at Buffalo, NY. She was a National Library of Medicine fellow in biomedical informatics and received her MBI from Oregon Health & Science University. Liz lives in Portland, Oregon.

Rebecca Davis, MS, LGC

Data Network Specialist

Rebecca joined the PMSIR team in 2014 as the Data Network Specialist. Her role is to take care of your data. She reviews genetic information to make sure it is entered into the PMSIR accurately, helps to create the policies that protect you and your data, and reviews the requests from researchers who would like access to your data. She also helps to make sure that any concerns regarding the PMSIR or website usability are addressed.

Before joining the PMSIR team, she was a clinical Genetic Counselor at the Cleveland Clinic Foundation in Cleveland, OH. She specialized in hereditary cancer risk, although she also worked in their Pediatric, Adult and Cardiovascular genetics clinics. She received her Master of Science in Genetic Counseling from Arcadia University in 2011.

Jackie Malasky, MPH

Family Engagement Specialist

Jackie joined the PMSIR team in 2014 as the Family Engagement Specialist with the Phelan-McDermid Syndrome Data Network (PMS_DN). She works with families to ensure they are able to use the PMSIR effectively and help solve any issues that come up along the way. She also plays a vital role in increasing participation in the Registry, both in encouraging families to sign up, and increase their engagement with questionnaires, uploading medical records, and creating solutions for data management challenges.

She received an undergraduate degree in Anthropology from New York University and received a Master of Public Health from the George Washington University. During her time at GW, Jackie focused her degree on Maternal and Child Health. She worked as a Genetic Counseling intern at the Genetic Alliance during the summer of 2009 and has since worked for non-profit organizations in the D.C. area. Jackie is currently based in Baltimore, Maryland.

Andria Cornell, MSPH

Project Manager

Andria Cornell is the project manager for the Phelan-McDermid Syndrome Data Network (PMS_DN). In her position, she directly leverages extensive experience of over eight years as a project manager of multi-year grants, cooperative agreements, and contracts funded by the federal government, private foundations, and corporations and on the topics of rare disease, maternal and child health, and epidemiology and public health informatics. Andria first met Megan O'Boyle and Geraldine Bliss and collaborated with the Phelan-McDermid Syndrome Foundation as a program manager and coordinator of family advocacy activities at Genetic Alliance. Even then, she was impressed by the generosity, energy, and poise Geraldine and Megan brought to the collaborations and work groups in which they engaged. Andria has worked with the Foundation since April 2014.  She has a Bachelor of Science Degree in Biology from the George Washington University and a Master of Science in Public Health Degree in reproductive, perinatal and women's health and a certificate in public health informatics from Johns Hopkins Bloomberg School of Public Health.

Debbie Jae, MS, LGC

Director of Programs, PatientCrossroads

Debbie Jae is the Director of Programs at PatientCrossroads and oversees the daily operations of large private patient registries representing a wide range of medical conditions.  Debbie has an M.S. in Genetic Counseling from the University of California, Irvine and a B.A. in Biology from Smith College. Debbie has experience in genetics, medical devices, and patient registries and collaborates effectively with physicians, scientists, engineers, business professionals, and the general public.  Ms. Jae has also published in peer-reviewed journals. 

Christine Guimmo, MS

Genetic Counselor, PatientCrossroads

Christine Giummo is a board certified genetic counselor who has worked as a genetic counselor for the past 15 years.  She has experience working in a hospital setting, a research lab, and a genetic education website.  She has experience working in prenatal, pediatric, and with adults as a genetic counselor.  Ms. Giummo received her B.S. from the University of Vermont and her M.S. in genetic counseling from the University of California at Berkeley.