For Patients

Zoi Andalcio

Zoi and his wife Katie were introduced to Boston Children’s Hospital when their son, Kamasi, was diagnosed with a brain malformation at 6 months old. He later developed infantile spasms and was found to have a rare DYNC1H1 gene mutation. This mutation caused various issues, including lissencephaly (pachygyria subtype), seizures, vision problems requiring two surgeries, low muscle tone affecting mobility, gastrointestinal difficulties, and developmental delays such as speech issues. Kamasi receives care from multiple subspecialties at Boston Children’s Hospital with regular follow-ups and weekly early intervention services at home.

Dr. Christina Briscoe Abath, then chief resident at the Infantile Spasms Clinic, introduced Katie and Zoi to the NFAC, encouraging them to join. Zoi seeks support from other families, wants to learn from researchers, and aims to offer solidarity and support to others in the NFAC. Zoi and Katie are committed to sharing their parenting journey and caring for Kamasi. They are grateful for the care they’ve received at Boston Children’s Hospital and the opportunity to be part of the NFAC.

Carolyn Barrett

Carolyn has been seen by Boston Children’s Hospital’s Department of Neurology since she was diagnosed with Spinal Muscular Atrophy in 1995. The innovation, creativity, and compassion that she has experienced at Boston Children’s over the past 25 years inspired her to pursue a career in healthcare. Carolyn currently works for Mass General Brigham’s enterprise communications where she oversees internal and system communication for Spaulding Rehabilitation.

A 2016 graduate of Boston College with BA in Political Science, Carolyn also holds an MS in Public Relations from Boston University. She has managed communications for leading healthcare and higher education organization and is passionate about ensuring that many different voices can be brought to the table. She’s honored to bring hers to this one.

Christine Barthelemy

Christine is a Regulatory Specialist for the Rosamund Stone Zander Translational Neuroscience Center at Boston Children’s Hospital. Previously, she was a research assistant for the Pediatric Mood, Imaging, and NeuroDevelopment Program at McLean Hospital and interned in the Laboratories of Cognitive Neuroscience under Dr. Susan Faja at BCH. Christine holds a Bachelor of Science in Biopsychology from Tufts University and is completing her Master of Science in Regulatory Affairs and Health Policy at MCPHS. She serves on the Neurosurgery Department’s Equity, Diversity, Inclusion, and Belonging committee and chairs the Equitable Care in an Inclusive Environment subcommittee.

Christine brings her personal experience as a neurology and cognitive development patient and is a sibling of someone with developmental disabilities, Christine understands the challenges families face in healthcare. She aims to use her life experience and education to guide investigators on best practices for clinical research, focusing on equitable research, reducing participant burden, and increasing accessibility and agency for families.

James Edward Johnson III

James is the father of 2 children, with both them and himself having autism spectrum disorder. He is currently based in Massachusetts to finish his last year of law school at Boston College but has lived in most of the States before. A medically-disabled paratrooper Sergeant, he learned of his ASD when discovering he would become a father in 2014, and self-referred to Army psychologists at the advice of his Officer-In-Charge. His daughter required speech therapy to help her move beyond solely non-verbal communications, and his son is developing similarly.
James joined NFAC after being informed of its existence through his Boston LEND fellowship. After his discharge he has continued to pursue public service work and following his passion for helping and serving our people.

Dylan Keusch

Dylan was introduced to Boston Children’s Hospital in 2019 when he suffered a traumatic brain injury at swim practice. His incredible care under the Department of Neurosurgery and the Brain Injury Center inspired him to pursue medicine in the hopes that he could help others like himself.

Dylan holds a BS degree from Cornell University, studying industrial and labor relations with a minor in health policy. He is a firefighter/EMT in a local community and is a research intern in the Department of Neurosurgery at Boston Children’s Hospital. His clinical interests include cerebrovascular surgery and interventions, traumatic brain injury and education, and global neurosurgery inequities. Dylan hopes to attend medical school in the hopes of becoming a neurosurgeon.

Shelley Sargent

Ms. Shelly Sargent lives in Hampden, Maine with her husband and 7 children. Her youngest child, Brielle, has Down Syndrome. Ms. Sargent serves on her local Down Syndrome board and local school board.

Dorothy (Dotsy) Zirkle

Dorothy (Dotsy) Zirkle is a nurse working on her PhD in Nursing at the University of Massachusetts Boston.  Her research is focused on perceptions of collaboration and partnership of healthcare providers and family caregivers of persons with severe-profound intellectual disability. Her research is driven by 34 years of experience caring for her son Matthew, who was born with profound physical and intellectual impairment. Dotsy is passionate about helping family caregivers navigate communication with healthcare providers due to her struggle to be respected and ‘heard’ by healthcare providers. Dotsy’s recently born granddaughter (8 Months), Sofia, was born with Hypoxic Ischemic Encephalopathy due to birth complications and is focused on supporting her daughter through the ‘unknowns’ of development.

As a 2022-23 LEND fellow, Dotsy was mentored by Kira Dies and Sylvia Lewinstein at the Rosamund Stone Zander Translational Neuroscience Center and became a member of the Neuroscience Family Advisory Council. Dotsy is thrilled to communicate with researchers that value family input.