The DSC2U Team


Brian Skotko, MD, MPP, a Board-certified medical geneticist, has dedicated his professional energies toward children with cognitive and developmental disabilities. In 2001 he co-authored the national award-winning book, Common Threads: Celebrating Life with Down Syndrome and, most recently, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. He is a graduate of Duke University, Harvard Medical School, and Harvard Kennedy School. Dr. Skotko received the Christian Pueschel Memorial Research Award for his pioneering research on how physicians deliver a diagnosis of Down syndrome to new and expectant parents. He has been featured in The Wall Street Journal, The New York Times, The Washington Post, The L.A. Times, NPR’s "On Point," and ABC’s "Good Morning America." Dr. Skotko serves on the Board of Directors for the Massachusetts Down Syndrome Congress and Band of Angels Foundation. He further serves on the Professional Advisory Council to the National Down Syndrome Congress. He has a sister, Kristin, who has Down syndrome.





Sandra Baker is Interim Executive Director of the Down Syndrome Association of Los Angeles (DSALA). She is also a member of the Parents’ Council for the Modified Consent Decree of the Los Angeles Unified School District. The Council oversees the school district’s compliance with state and federal laws involving the provision of special education services.

Since 2007, Ms. Baker has played a key role in opening the DSALA’s doors to Spanish-speaking families, and in providing DSALA materials to families in their primary language. Ms. Baker is a graduate of the California Leadership Education in Neurodevelopmental and Related Disabilities Program provided by the University of Southern California and Children’s Hospital Los Angeles. She is a member of the Self-Determination Advisory Committee of North Los Angeles County.

Ms. Baker and her husband have an adult daughter and a younger son with Down syndrome. They have lived in the Los Angeles area for over 25 years.



Patricia E. Bauer is a trustee of the Riverview School on Cape Cod and a founder of UCLA’s Pathway Program, both of which provide educational opportunities for students with intellectual and developmental disabilities. She also served as a longtime member of UCLA’s Medical Institutional Review Board, which is responsible for reviewing medical research and protecting the rights of research participants.

A journalist, Ms. Bauer has published widely on issues related to disability. She served as senior editor of the Los Angeles Times Magazine and as political reporter, bureau chief and special assistant to the publisher at the Washington Post. She was the editor of the White House News Summary in the White House Press Office during the Carter Administration.

Ms. Bauer is a graduate of the University of Michigan and lives in Los Angeles. She and her husband have two adult children, one with Down syndrome.



Sarah Cullen is the family support director for the Massachusetts Down Syndrome Congress (MDSC). She oversees the MDSC’s Parents First Call program, which provides accurate, up-to-date information and mentorship to more than 150 new and expectant Massachusetts families each year.

Ms. Cullen has also helped advocacy organizations set up similar programs across the country. In her role with MDSC, she provides support to families with a loved one with Down syndrome of any age.

Ms. Cullen and her husband Dan have three children. Her son Matthew has Down syndrome.



Lisa Majewski, MSW, is a retired licensed independent clinical social worker and an honorary member of the board of directors of the Massachusetts Down Syndrome Congress. She serves as a teacher of English to poor and homeless women at Rosie’s Place in Boston, and as a parent volunteer and board member at the Barry L. Price Rehabilitation Center in Newton, Massachusetts.

Ms. Majewski is the mother of a young man with Down syndrome.



Jawanda Barnett Mast is host of TheSassySouthernGal.com, a disability related blog. She is mom to Rachel, a teenager who has Down syndrome.

Ms. Mast played a key role in the passage of the federal ABLE Act, which allows people with disabilities and their families to set up special savings accounts for disability-related expenses. She and Rachel speak around the country on the topics of inclusion and advocacy.

A graduate of the Tennessee Partners in Policymaking Institute, Ms. Mast also serves on the Kansas Emergency Safety Intervention Task Force and the University of Kansas Special Education External Advisory Board. Previously, she was manager of grassroots advocacy for the National Down Syndrome Society (NDSS).

Ms. Mast has bachelor’s and master’s degrees in human development and family studies from the University of Arkansas. She lives in Olathe, Kansas, with her husband Jonathan and Rachel.



Melissa Kline Skavlem is chief operating officer for Gardner Business Media, Inc., a business-to-business trade publisher that covers manufacturing in North America. Among the company’s publications are Modern Machine Shop magazine and Plastics Technology.

A graduate of DePauw University in Greencastle, Indiana, Ms. Skavlem sits on the advisory board for the National Down Syndrome Adoption Network. She has served as president of Down Syndrome Pregnancy and as board member of the Down Syndrome Association of Greater Cincinnati.

Ms. Skavlem is a board member of the Reshoring Initiative, a national group seeking to bring manufacturing jobs back to the United States. She is a member of Cincinnati’s Mercy Health Blood Cancer Center’s Foundation Advisory Group, and has served on the board of the University of Cincinnati’s Goering Center for Family Business.

She and her husband Steve live in Cincinnati and are parents to three daughters, one of whom has Down syndrome.




Dr. Ariel S. Frey-Vogel divides her time between the Massachusetts General Hospital for Children Pediatric Residency Program, where she is an associate program director, and MGH Everett Family Care, where she practices internal medicine and pediatrics.

Dr. Frey-Vogel’s professional interests lie in developing ways to improve medical education, including the use of simulation to help educate and evaluate pediatric interns.

A neurobiology graduate of Harvard University, Dr. Frey-Vogel earned her master’s in the Art of Teaching at Johns Hopkins University while teaching third grade in Baltimore with Teach for America. Dr. Frey-Vogel is a graduate of the Yale School of Medicine, and completed her residency in internal medicine and pediatrics at Massachusetts General Hospital.

She and her husband are the parents of two young children.



Dr. Reem Hasan is an internist and pediatrician who practices medicine at Oregon Health & Science University in Portland, Oregon. Dr Hasan cares for patients with diverse backgrounds at all stages of life, with a special focus on preventive medicine and the care of adolescents and young adults. She is particularly focused on innovative ways of delivering care to pediatric and young adult patients with complex medical needs.

Dr. Hasan is a graduate of Georgetown University and the medical school and school of public health at the University of North Carolina at Chapel Hill. She completed her medical residency at the University of Michigan in Ann Arbor. Originally from North Carolina, Dr. Hasan enjoys exploring the parks and trails of Oregon with her family.



Dr. Ashley Lamb is a primary care doctor who cares for patients of all ages from babies to grandparents. A board-certified pediatrician and internist in Epping, New Hampshire, Dr. Lamb strives to serve entire families.

She particularly focuses on working with adolescents and young adults with chronic medical conditions as they learn how to take care of themselves, and also has interests in literacy efforts, vaccination programs and community resources for patients with special needs.

A graduate of Yale University, Dr. Lamb earned her MD and master’s in public health at the University of North Carolina at Chapel Hill. She completed her medical residency at the Harvard/Massachusetts General Hospital Medicine-Pediatrics Residency Program. Dr. Lamb is a hockey player and hiker. She and her husband have two children.



Dr. Travis Riddell is a board-certified pediatrician who cares for patients in Jackson, Wyoming. He also serves as Teton County public health officer.

Dr. Riddell graduated from Stanford University with a bachelor’s degree in environmental science, and received his MD and master’s in public health from Oregon Health & Science University. He completed his pediatric internship and residency at the Boston Combined Residency Program in pediatrics. He served as a teaching fellow at Boston Medical Center and a clinical fellow at Boston Children’s Hospital.

In addition to his clinical work, Dr. Riddell focuses on pediatric environmental health and has published research involving underserved populations in Nepal, China, and the Philippines. He writes an occasional column for the Jackson Hole News & Guide. Dr. Riddell is a hiker, biker, climber and backcountry skier. He and his wife have two young children.




Dr. Marilyn Bull is the Morris Green Professor of Pediatrics at Indiana University School of Medicine. She also serves as the Medical Director for the Down Syndrome Program and the Feeding Program at the James Whitcomb Riley Hospital for Children at Indiana University Health.

Dr. Bull is board certified in pediatrics, clinical genetics, and neurodevelopmental disabilities. She is the American Academy of Pediatrics Representative to the Down Syndrome Research Consortium of the National Institute of Child Health and Human Development, and serves on the National Institutes of Health Down Syndrome Registry Governance Board.

Dr. Bull is nationally recognized for her work with child safety seats, especially for children with special needs. A graduate of Michigan State University and the University of Michigan medical school, she helped pay her way through school by baking cherry pies for her family’s farm stand.



Dr. Brian Chicoine is co-founder and medical director of the Advocate Adult Down Syndrome Center in Park Ridge, Illinois. The Center has served and documented the health and psychosocial needs of over 6,000 adolescents and adults with Down syndrome since 1992.

Dr. Chicoine has published many articles and co-authored two books, "Mental Wellness of Adults with Down Syndrome," and "The Guide to Good Health for Teens and Adults with Down Syndrome." He presents regularly at national and regional conferences.

A graduate of Loyola University of Chicago Stritch School of Medicine, Dr. Chicoine is on the faculty of Family Medicine at Advocate Lutheran General Hospital in Chicago.



Maureen Gallagher is executive director of the Massachusetts Down Syndrome Congress, one of the nation’s largest regional organizations serving people with Down syndrome and their families.

Since joining MDSC in 2007, Ms. Gallagher has dramatically expanded the organization’s reach and overseen the development of new programs including the Parents First Call Program, a statewide volunteer group of parent mentors that has been replicated by 17 other organizations nationwide. She has also spearheaded public policy efforts that led to the passage of federal and state laws to support and improve lives of people with disabilities and their families.

Ms. Gallagher has been recognized by the National Down Syndrome Society with a Champion of Change Award as Ambassador of the Year. Previously, Ms. Gallagher was deputy director of Partners for Youth with Disabilities, a Boston nonprofit.

She is the mother of an adult daughter with a developmental disability.



Dr. Melissa A. Parisi is the chief of the Intellectual and Developmental Disabilities Branch at the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institutes of Health (NIH). She earned her MD degree and her doctorate in developmental biology from Stanford University.

Dr. Parisi oversees the Intellectual and Developmental Disabilities Research Centers program at NICHD, and is focused on advancing basic, clinical, and translational research that will improve the lives of individuals with developmental disabilities.

Dr. Parisi leads the development team for the NIH-funded DS-Connect©: The Down Syndrome Registry, an online, secure, confidential database with demographic and health information about individuals with Down syndrome designed to further research on this condition and connect families with resources about Down syndrome.



Dr. Karen R. Sepucha is the director of the Health Decision Sciences Center in the Division of General Internal Medicine at Massachusetts General Hospital and an assistant professor in medicine at Harvard Medical School.

Dr. Sepucha is responsible for efforts to promote shared decision making in primary and specialty care at MGH and across Partners HealthCare, with the goal of assuring that patients are well-informed and meaningfully involved in making decisions involving their medical care. She has overseen the training of more than 1,000 clinicians in shared decision-making communication skills.

Her recent research has focused on the development of survey instruments to measure the quality of decisions. Dr. Sepucha earned her doctorate in engineering-economic systems and operations research at Stanford University with a focus in decision sciences.




Jessica M. Avila, MSW, LICSW is a clinical social worker and diversity outreach coordinator for the Down Syndrome Program at Massachusetts General Hospital. Ms. Avila provides social work services and care coordination to pediatrics and adult patients. In addition, she provides outreach and education to diverse individuals around our DSC2U program, an online tool that provides caretakers specialized information on their loved one with Down syndrome. Ms. Avila’s goal is to provide access to diverse groups to ensure access and inclusion of quality health services.

A graduate of Boston Collage Graduate School of Social Work, Ms. Avila has worked with youth and adults from diverse ethnic and cultural backgrounds in multiple settings which include, inpatient psych, medical advocacy, community outreach, and social justice. Ms. Avila’s strength based and empowering approach allows a unique ability to connect with people on a level where she can motivate, uplift , encourage and guide individuals to find their voice; making the clinical experience warm and easy going.

In her spare time, Ms. Avila enjoys time with her family, outdoors, and reading. Her youngest son Jacob has Down Syndrome.



Dyan R. Blewett is a project manager and technical specialist at the Massachusetts General Hospital Laboratory of Computer Science (LCS).

Her work at LCS has included Medinfo, a MGH research studies database system; Contributing to the Unified Medical Language System (UMLS) project for the National Library of Medicine, an EMR for Boston Health Care for the Homeless Program (BHCHP); OB EMR, an Obstetrical EMR used for MGH Inpatients and Outpatients; and LEARN, a catalog system of online, classroom, and simulation trainings.

Ms. Blewett has a BS in Biology and Mathematics from Boston College, and a MS from Boston University in Computer Science. A master gardener, Ms. Blewett volunteers at the historic Shirley-Eustis House in Roxbury. Ms. Blewett is also a trustee and the treasurer of the Somerville Museum. She resides with her husband and beloved cat, Suzie Q, who loves to participate in Zoom/Team meetings.



Dr. Jeanhee Chung practices primary care medicine at the Massachusetts General Hospital and is a member of the faculty at the MGH Laboratory of Computer Science, where she has been leading teams to design applications for patients and clinicians for over ten years.

Dr. Chung has collaborated with the MGH Down Syndrome Program over the past several years, developing innovative digital health tools. She led the design team that developed the Sprout Scribe software application, which enables programs like Down Syndrome Clinic to You.

A graduate of Williams College and Temple University School of Medicine, Dr. Chung completed her residency training at New York Presbyterian Hospital-Columbia Presbyterian Medical Center. She is an instructor in medicine at Harvard Medical School.



Dr. Karen Donelan is a senior scientist in the Mongan Health Policy Center at Massachusetts General Hospital and an associate professor of medicine at Harvard Medical School. Dr. Donelan is a health survey researcher who has designed and conducted surveys of patients, families, the public and health professionals locally, nationally and internationally. She is dedicated to including the voices and experiences of all people in efforts to improve access to and quality of health care.

Dr. Donelan has a doctorate in health policy from Harvard’s School of Public Health, and a master’s in education from Harvard’s Graduate School of Education. She serves on the board of Bridges Associates, a non-profit on Cape Cod that works with young people with intellectual disabilities to build life skills, study skills, and opportunities for social interaction.

Dr. Donelan is married to a physician who treats cancer patients, and has three young adult children.



Dr. Ibrahim Elsharkawi studied medicine at the Royal College of Surgeons in Ireland-Medical University of Bahrain through a joint program between Ireland and Bahrain. He served for two years as a postdoctoral research fellow at Massachusetts General Hospital, in the medical genetics department and in the MGH Down Syndrome Program.

Dr. Elsharkawi concentrates on healthcare disparities among people with disabilities or genetic conditions, as well as among immigrant populations. He is now training in the pediatrics and medical genetics combined residency program at Washington University in St. Louis.



Dr. Grace Hsieh is a registered nurse with a specialty in medical informatics, and a member of the faculty at the Massachusetts General Hospital Laboratory of Computer Science. She obtained her doctorate in Nursing Informatics from the University of Wisconsin-Madison.

Dr. Hsieh has developed an expertise in designing and evaluating information technology tools that support patient education, and is exploring the use of games to engage patients in their care. She is also seeking to identify factors important for engaging people to participate in research.



Stephen Lorenz is a member of the team at the Massachusetts General Hospital Laboratory of Computer Science. He has worked as a systems architect, and in web programming, information systems, and system and database administration in various fields including healthcare, the pharmaceutical industry, and higher education for nearly 20 years.

Mr. Lorenz’s work focuses on the design of web systems to better connect patients, providers, and researchers. He has served as the primary system architect and developer for SproutForms, a suite of information collection tools. He has also spearheaded the development of the Patient Research Portal, which helps to connect researchers with prospective research volunteers.



Dr. Eric Macklin, PhD, is an assistant biostatistician at the Massachusetts General Hospital Biostatistics Center, as well as an instructor in the Department of Medicine at Harvard Medical School.

His research focuses on neurodegenerative and neurodevelopmental diseases. He assists with clinical trial design, implementation and analysis of new therapies for people with autism, Parkinson disease and ALS.

Dr. Macklin has collaborated with Dr. Skotko on a project assessing family attitudes toward people with Down syndrome and in developing a model to screen people with Down syndrome for obstructive sleep apnea. He holds advanced degrees from Stanford, Duke, and Harvard.



Holly Parker is a project manager and content and communications specialist at the Massachusetts General Hospital Laboratory of Computer Science (LCS). She is dedicated to improving the healthcare experience through patient engagement and technology.

Her work at LCS has included iHealthSpace, a patient portal website; Sprout, a forms application used to collect patient data and convert it into meaningful output; and the Partners Clinical Trials website, a user-friendly service the helps patients search for and connect with research studies that meet their interests.

Ms. Parker moved to Boston from her native Ohio in 2004 to complete her degree in writing, literature, and publishing at Emerson College. An avid photographer, she lives with her husband and two pet rabbits.



Vasiliki Patsiogiannisis a graduate from Fordham University, Rose Hill College, with a degree in Theology and Pre-medical studies. She is now studying to receive her Master in Public Health from the Bouvé College of Health Sciences, at Northeastern University, with a concentration in Urban Health. Vasiliki served as clinical research coordinator in the Down Syndrome Program at MassGeneral Hospital for three years, where her passion for research in Down syndrome care and disparities in health care grew. She is committed to learning how to address health disparities, locally and globally, through her future public health studies and practice.



Dr. Alison T. Schwartz (Allie), is a pediatrician and internist who cares for patients of all ages. She is particularly focused on improving the lives of people with Down syndrome and other special health care needs.

Dr. Schwartz cared for patients with Down syndrome at the MGH Down Syndrome Clinic since 2011, serving as the clinic’s co-director since from 2012-2017. She was also member of the Medical and Scientific Advisory Council of the Massachusetts Down Syndrome Congress.

A former residential coordinator at a school for young people with autism and traumatic brain injury, Dr. Schwartz earned degrees in child development and medicine from Tufts University. Currently, Dr. Schwartz is Chief Medical Officer at Florida Atlantic University.



Amy Torres is the program manager for the Down Syndrome Program at Massachusetts General Hospital. Along with helping patients navigate MGH’s Down syndrome clinic, she coordinates special projects and oversees research.

A graduate of the University of Delaware in exercise physiology, Ms. Torres previously managed the genetics training program for Harvard Medical School. She has also served as manager of human resource activities for Partners HealthCare Personalized Medicine.

When she’s not working, Ms. Torres enjoys practicing yoga, reading and entertaining.



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Mark Wylie is a senior user interface specialist at the Massachusetts General Hospital Laboratory of Computer Science, where he has spent the past dozen years working to assure that web pages can be easily understood and navigated by users.

Mr. Wylie’s background includes illustration, print, web and mobile design. He is now focused on developing novel ways to display information consistent with accessibility standards and responsive design. An avid designer and photographer, Mr. Wylie studied criminal justice at Westfield State University in Westfield, MA.