Together, the members of the Boston Children's Hospital Family Advisory Council have decades of experience navigating complex health conditions and pediatric care. They joined the council to share the expertise and insights they've gathered along the way — with physicians, nurses, hospital administrators and support staff, and other patient families. Their dedication and hard work helps make the care and patient experience at Boston Children's as excellent as possible for all patients, whether they visit once a year or dozens of times a year.
Interested in joining the council? Contact us at FamilyPartnerships@childrens.harvard.edu or fill out our online form for more information.
Experience/Areas of Interest: Pediatric Hematology/Oncology, Dravet Syndrome/Neurology/Epilepsy/Rare Disease, Research, Clinical Trials, Emergency Department, Child Life.
About Natasha: Natasha Aljalian is mom to Gabriel (born in 2008) and Mary (born in 2013). Gabriel was diagnosed with B-Cell Acute Lymphoblastic Leukemia in 2013. He was cared for by the Boston Children’s Pediatric Hematology/Oncology and Blood Disorders Center, in conjunction with Dana Farber’s Jimmy Fund Clinic, for the following 3 years while he underwent cancer treatment and care for after effects of treatment. Mary was diagnosed in 2015 with Dravet Syndrome, a rare form of epilepsy, and is cared for by the Department of Epilepsy and Neurophysiology at Boston Children’s.
Natasha and her family are grateful that their children are receiving care at the best hospital in the country, and from the best doctors, nurses, and staff at Boston Children’s. Her children have been cared for by most every department in Boston Children’s. She considers herself fortunate to have formed partnerships (and friendships) with the caregivers at Boston Children’s, and to feel a valued and contributing part of their treatment plans. Natasha joined the Family Advisory Council to partner with Boston Children’s, help implement system-wide improvements to benefit other patients and families, and to provide valuable insight from a parent’s perspective. An attorney by profession, she is also a member of the Boston Children’s Virtual Advisors group.
Member since: 2012
Experience/Areas of Interest: Kidney transplant and dialysis, inpatient experiences, children with disabilities and complex medical care, pediatric palliative care, rare and undiagnosed diseases.
About Brenda: Brenda is the mom of three children. Her youngest daughter, Jillian, was born with complex medical needs and disabilities, which were recently diagnosed as an extremely rare WDR19 related ciliopathy disease. In 2002, when Jillian was an infant, she received a kidney transplant at Boston Children's, and has had many other inpatient experiences at the hospital. She is also followed by numerous specialists in the hospital's outpatient care clinics.
Because Jillian's condition is currently considered to be a unique genetic variant, Brenda has found it crucial to cultivate collaborative partnerships with medical teams to think "outside the box" in developing care plans.
Brenda is grateful for the expertise and innovation of the physicians and staff at Boston Children's. She was involved in the early development of an FAC at her local hospital, and in 2012 joined the Boston Children's Hospital Family Advisory Council to work with other families on projects to support family-centered care. She is particularly committed to working on projects relating to communication between families and providers and coordination of care across practices and hospitals.
Brenda lives in Western Massachusetts and works as a teacher of students with visual impairments, focusing on early childhood education. Her experiences with her daughter as well as her students have given her a passion for helping families of children with rare and complex diseases become active leaders in systems of care.
Member since: 1989
Experience/Areas of Interest: Autism, complex care, palliative care, home care nursing.
About Lisa: Lisa is a wife and mom of three boys. Her eldest son, Benjamin, was a primary care patient at Boston Children’s. Jamie, her middle son, has been a multi-complex care patient since 1985. Jamie has had more than 500 admissions to date and averages 60 outpatient visits per year. Lisa’s youngest son, Dakota, has the diagnosis of autism.
Lisa has enjoyed the opportunity to collaborate with state and community agencies. She has participated in multiple projects with the Massachusetts Department of Public Health (DPH), including the design of “Directions,” a resource guide for families of children with special health care needs. She is also on several other advisory boards in the Boston area.
Lisa truly believes in the mission of Boston Children’s, and has witnessed the practice of patient- and family-centered care with her own children and countless others. Serving as a member of the Family Advisory Council is something close to Lisa’s heart, as it is a way to give back and make meaningful change in the lives of patients and families. Lisa participated in Family Centered Rounds Project and has spoken at the Children's Hospital Advocacy Network (CAN) Legislative Breakfast in Washington, DC. She is a former member of the Complex Care Advisory Board.
Lisa has many hobbies, including Chevy trucks, going to the beach, watching the Boston Bruins, auto racing, and bass fishing with her husband, Mark.
Read Lisa's story on Thriving, our patient and family blog.
Member since: 2016
Experience/Areas of Interest: GI, Orofacial Granulomatosis, Crohn's Disease, Concussion Prevention, Multi-disciplinary Outpatient Coordination, Technology to enhance patient/provider care.
About Michelle: Michelle is the proud mom of Carson. Carson has been treated at Boston Children’s since 2012 for Oro-facial Granulomatosis (OFG), a chronic inflammatory condition of the mouth that is highly associated with Crohn’s Disease. Carson’s OFG progressed to Crohn’s Disease in 2015, affecting both his bowel and his mouth.
Michelle has extensive experiences navigating the healthcare system and creating technology tools to help her do so. Since day one of her son’s diagnosis she has worked tirelessly to improve health systems and empower patients and families to be active partners in their/their child(ren)’s care. In 2014 Michelle, along with Carson, joined the fundraising efforts for Boston Children’s Hospital by creating “Carson’s Crew” and participating in the annual Walk for Kids. Their team motto is: "When life hands you lemons… Make a difference." And make a difference they have, recruiting large teams for Carson’s Crew and raising significant funds, year after year, to benefit Boston Children’s.
In October, 2014 Michelle was selected to be one of the keynote speakers at Boston Children’s Hospital’s “Hacking Pediatrics 2.0” and shared her top self-created technology tools that have helped her both manage Caron’s condition and bridge the gap between patients and and their care team.
In addition to Michelle's experience with her son's chronic illness, she began her own patient experience journey in 2008 after suffering a Traumatic Brain Injury. Michelle's dual adult/pediatric experiences enable her to bring a unique perspective to the Family Advisory Council.
Michelle lives with her husband Chris, and Carson, in Bellingham, MA. She owns and operates a corporate travel business, established in 2002, and serves the Commonwealth as a National Lancer in the Militia’s Ceremonial Cavalry Unit.
Read more about Michelle and Carson on our patient and family blog, Thriving.
Member since: 2016
Experience/Areas of Interest: Rheumatology, chronic illness, care coordination, complex care, inpatient stays.
About Sabrina: Sabrina lives in New Hampshire with her husband and their two daughters. At about 15 months of age, Sabrina's daughter was diagnosed with Systemic Juvenile Idiopathic Arthritis (SJIA) and has spent a significant amount of time at Boston Children’s in the years since her diagnosis, both inpatient and outpatient. She is overseen by several specialty clinics at Boston Children's, but her care is managed primarily by the Rheumatology Department.
Sabrina and her family are grateful for the level of care that her daughter receives at Boston Children's, particularly from her Rheumatology team, who are essential in managing a complicated chronic disease like SJIA.
Sabrina joined the Family Advisory Council as a way to help other families and contribute to an institution that is so important to her and her family.
Sabrina is a lawyer in the health care field, serving as senior corporate counsel at a company that provides cloud-based services for medical practice management. She hopes to draw on her professional experience, as well as her personal experiences at Boston Children's, when working on projects for the Family Advisory Council. She is interested in working with families who also have children with rare or chronic diseases, as well as working on health policy/regulatory issues and technology projects. In addition to her work on the Family Advisory Council, Sabrina is Chair of the Juvenile Arthritis Committee affiliated with the Arthritis Foundation's Newton, MA office.
Member since: 2012
Experience/Areas of Interest: Liver disease, GI clinic, radiology, emergency department, digital health, care coordination, patient and family experience, patient safety and quality.
About Valerie: Valerie is the mother of two children. In 2004, at just eight weeks old, her son was diagnosed with biliary atresia, a rare, chronic liver disease. He underwent immediate surgery at Boston Children’s, and continues to be followed there by the Gastroenterology and Transplant teams. Valerie’s deep connection to Boston Children’s comes from her family’s experiences with the doctors, nurses and other staff and the extraordinary care they have provided her son. She is passionate about advancing patient-centered care and working in partnership to improve the patient and family experience.
In addition to serving on the Family Advisory Council, Valerie is executive director of NEHI, a non-profit health policy institute whose mission is to advance innovation in health and health care. Valerie also serves on the Board of Trustees for Hebrew Senior Life and Playworks. She lives in Newton, MA with her husband and two children.
Member since: 2016
Experience/Areas of Interest: Celiac Disease and associated lifestyle issues, patient/family wellness, autoimmune diseases.
Jennifer is the mother of three girls. In 2004, her two oldest daughters were diagnosed with celiac disease, at the ages of five and three. She was pregnant with her third daughter at the time. Celiac disease is an autoimmune disorder that affects primarily the small intestine and meant that her children could not digest gluten and had to change their diet and their lifestyle in order to remain healthy.
Upon their diagnosis, Jennifer joined Boston Children’s Hospital Celiac Support Group as a Board Member. She worked in various roles with the group over the years, including providing support to newly diagnosed families. Her children have also been seen by other specialists throughout the hospital. Jennifer is grateful for the excellent care she and her children have received at Boston Children’s Hospital.
In Jennifer’s professional life, she has worked in both the non-profit and private sector in development and marketing. She is also a Certified Holistic Health Coach, a role she took on after her children’s diagnosis in order to help her family live a healthy, gluten free lifestyle. Currently, Jennifer is employed by Boston Children’s Hospital as a Family Partnerships Coordinator, focusing on creating and marketing wellness programming for patients and their families. She is also committed to working with both hospital leadership and employees as well as families to ensure that the family perspective is a priority across all areas and departments.
Member since: 2014
Experience/Areas of Interest: ICU, ECMO, outpatient cardiology, high reliability.
About Serena: Serena is the mother of two children, Julia and Sebastian. In late 2013, her daughter, then nearly four years old, was transferred to Boston Children’s MSICU, where her breathing difficulties from RSV required advanced intervention. She spent six days on ECMO; the Extracorporeal Membrane Oxygenator takes over the function of the heart and lungs while the body heals.
Julia is followed in outpatient cardiology and Cardiac Neurodevelopmental Program.
In her professional life, Serena’s career as a dance/movement therapist has focused on emotional expression and the creative process. She has treated people dealing with mental health issues across the lifespan from preschoolers to the elderly. She has also been involved in the education of dance/movement therapy students as a clinical mentor and adjunct faculty.
Serena joined the Family Advisory Council in 2014, and has worked on the High Reliability Initiative, an effort to eliminate preventable harm to patients and employees. She seeks to bring to light the emotional needs of patients and families. She feels immense gratitude for the expertise and care Boston Children's offers.
On the weekends, Serena can be found walking in the woods with her husband and children, listening to the woodpeckers and enjoying the stream near her house.
Member since: 2012
Experience/Areas of Interest: Chronic Lung Disease, care coordination, complex care, home oxygen, G-tube, home care nursing and equipment, feeding/swallowing/voice challenges, long-term inpatient stays.
About Katie: Katie Litterer is the mother of identical twins, Sophie and Maddie. In 2008, Maddie and Sophie were born at 27 weeks gestation and had severe complications associated with their prematurity. Following the girls’ birth, Katie left her career to care and advocate for her daughters. As a result of Sophie and Maddie’s needs, Katie has extensive hospital and health care experience, both in- and outpatient, as well as home nursing care.
Katie began her volunteer efforts at Boston Children’s Hospital in 2009, while Maddie was still hospitalized. She served on the Neonatal Intensive Care Unit (NICU) Family Advisory Council for two years and then joined the hospital-wide Family Advisory Council in 2012. In 2016, Katie joined Boston Children’s Hospital as an employee, taking on the role of a Family Partnerships Coordinator in which she seeks to extend and broaden the reach of the patient/family perspective throughout the hospital.
Katie lives with her husband, Paul, and their daughters outside of Boston. She is actively involved in her daughters’ school district and also serves as trustee of a charitable private foundation dedicated to supporting archaeological research of native peoples in the Americas. Most importantly, though, Katie continues to coordinate care and advocate for her girls as they navigate school, friends, activities, and their complex chronic illnesses.
Read more about Katie and her family on our patient and family blog, Thriving.
Member since: 2012
Experience/Areas of Interest: Tracheostomy, G-Tubes, Long Term Care, Home Care, Home Nursing, Durable Medical Equipment navigation, NICU, Complex Care, Coordinated Care, Parent to Parent Networking.
About Sarah: Sarah Morris is the proud mother of premature twins, Drew and Emma, born in 2008. Emma has spent more than 400 nights at Boston Children’s Hospital. Emma has been diagnosed with a type 3 laryngeal cleft, lung disease and a primary immune deficiency that brings her in for monthly infusions to name a few.
Sarah has had to learn to manage home nursing care at its finest, from durable medical equipment to pediatric home nursing care, as well as making late night calls to Emma’s doctors to do critical thinking of how to keep her safely at home. Learning along the way, Sarah has become a strong advocate for her children and is able to adeptly navigate the medical world. Her nights have been spent researching diagnoses and organizing medical equipment and supplies. She feels as a caregiver she has been given one of the most amazing jobs and every day brings new surprises.
Giving back to Boston Children’s Hospital has been a priority for Sarah and her husband, Jon. Before joining the hospital-wide Family Advisory Council, Sarah served two years as a member of the NICU Family Advisory Council along with her husband. They both have found individual avenues of contributing to bring the parent voice into different areas of the hospital.
Read more about Sarah and her family on our science blog, Vector.
Member since: 2014
Experience/Areas of Interest: Developmental medicine (cognitive development and neuroscience, ADHD, developmental delays), care coordination.
About Lisa: Lisa is the mom of three children: Georgeanne, William, and Charlie. William was diagnosed with a Chiari I malformation and developmental delays at an early age. Lisa has been an advocate for William as he navigates academic, social, and physical activities in a world that often moves faster than he does.
Lisa began her volunteer relationship with Boston Children's Hospital as a Miles for Miracles participant in 2009, raising funds and awareness for Boston Children's while pursuing her lifelong passion of running.
Lisa joined the Family Advisory Council to bring her perspectives and experience with outpatient and satellite clinic care to the group. Prior to becoming a mom, Lisa worked as a healthcare consultant, primarily focused on decision support tools and their use. She considers it a privilege to be able to give back to Boston Children's as well as stay abreast of pediatric healthcare advancements and challenges as part of her Council responsibilities.
Lisa and her husband, Sean, live outside of Boston with their three children. Lisa is actively involved in her children’s schools and plays a leadership role on her community’s special education parent advisory council. Lisa also enjoys coaching youth sports and building youth-oriented recreation programs.
William O'Donnell (Co-Chair)
Member since: 2012
Experience/Areas of Interest: Pulmonary Hypertension, Cardiology, High Reliability Organization.
About Bill: Bill lives in Medford with his wife and daughter, Shannon. Shannon was diagnosed with Idiopathic Pulmonary Hypertension in 2001 has been a patient at Boston Children’s ever since.
Bill feels it’s imperative to give back to the hospital that saved his daughter’s life. In addition to being a member of the Family Advisory Council, Bill and his family have been involved in several fundraisers including Shannon being a patient partner for marathons. Bill is an avid blood donor and encourages everyone who is eligible to donate.
Read more about Bill and his family on our patient and family blog, Thriving.
Member since: 2016
Experience/Areas of Interest: Complex congenital heart disease, GI (feeding challenges & intolerance),
Nephrology, Pulmonology, extended hospital admissions, home care, care plan management, shared decision-making.
About Tyson: Tyson and his wife Sarah are parents to two boys, the younger of which was born with complex congenital heart disease. Lifelong residents of Sacramento, CA, Tyson and Sarah spent nearly two years attempting to manage their son’s care with the help of the terrific centers in Northern California. As their son’s case become increasingly challenging, they transferred his care to Boston Children’s and relocated their family to Massachusetts.
Facing unattractive odds and a series of baffling complications, Tyson and Sarah have tried to be partners in their son’s care, rather than simply deferring to the experts. Their deep knowledge of their son’s case and their ability to experiment with small and frequent adjustments to the care plan has repeatedly bent their son’s outcomes in a favorable direction. They have discovered the invaluable role that loved ones can play in care planning, and the powerful therapeutic effect of being able to contribute to a loved one’s care.
Although they have no medical background, Tyson and Sarah strive to grow whatever knowledge and capabilities they need to rise to the challenges their son faces. Rather than delegate problem-solving to the professionals, they try to integrate the expertise of their son’s numerous and shifting team members to continually optimize care planning.
Tyson’s passion for this collaborative family-driven approach, and his desire to see the healthcare system continue moving in this direction led him to join the Family Advisory Council.
Tyson’s professional background is in Quality Engineering and Operational Excellence (aka Lean), originally with the defense industry but currently with a company in the Boston area that makes medical devices to recover failing hearts.
Member since: 2009
Experience/Areas of Interest: Complex Congenital Heart Disease; plastic bronchitis; electrophysiology (pacemaker); ascites; chronic care coordination; complex care; home oxygen; long-term inpatient stays; patient and family engagement; patient-centered medical home (PCMH); medication management / reconciliation; quality improvement and patient safety; patient experience data; e-Patient / e-Mom (e for equipped, empowered, enabled, and engaged in our care); care planning; improving discharge; and transitioning medically complex care from pediatric to adult care services.
About Tami: Tami and her husband David are the parents to their only ‘child’ Jameson, born with complex heart defects (Double-outlet right ventricle of the transposition type, referred to as DORV or Taussig-Bing anomaly.) Jamie has had 4 open-heart reconstructive surgeries, has battled the rare complication plastic bronchitis, and is currently running on his 4th heart pacemaker.
Tami joined the Boston Children’s Family Advisory Council in 2009, working on numerous patient and family improvement initiatives. Tami was a parent-champion in the effort to bring family-centered bedside care-plan rounding, in which she’d participated when Jamie received 2 years of specialty inpatient pulmonary treatment and care at the Massachusetts General Hospital for Children, back to Boston Children’s in 2009.
Beyond family engagement work at Boston Children's, Tami has been on the Massachusetts statewide Hospital Patient and Family Advisory Council (PFAC) leadership steering effort since 2011, planning workshops and content for the annual PFAC conference and developing PFAC best practice strategies. Also at the statewide level, she consulted as a family leader from 2012 – 2015 on the nationally-funded Mass Child Health Insurance Project (CHIPRA) with the National Institute for Child Health Quality (NICHQ), focused on creating and improving comprehensive care coordination strategies for children and youth with complex care needs.
As Jamie’s health improved, he was able to realize his dream to study film and television production in New York where he now lives, after graduating from college in 2015. Before Jamie was born, Tami worked in healthcare finance and in hospital strategic quality management. Since returning to work, Tami has directed the MA Coalition for Prevention of Medical Errors, consulted to improve dementia care and become active in the healthcare family engagement, innovation and social media communities.
Born and raised in the Metro-West area of Boston, Tami is a 3rd generation member of the landmark Framingham Heart Study.
Member since: 2014
Experience/Areas of Interest: Mental Health, Autism, Hydrocephalus, Low Vision, Care Coordination, Prematurity, Pediatric to Adult Transition, and Family Leadership.
About Darcy: Darcy is the mother to three children: Jack, Jessica, and Amanda. Darcy currently works as the Director of Family Connections at Walker, and has worked in the area of family support/leadership for over 10 years.
In 1996, when Darcy’s first daughter Amanda was born at 33 weeks premature weighing 4lbs 1oz, Darcy was unexpectedly thrust into the world of disability. Raising Amanda as a single mother for 7 years, Darcy gained valuable life experience that she passed on to other families in similar situations. In 2003, when Darcy’s second daughter Jessica was born at 34 weeks and weighing 3lbs 12oz, she was able to better navigate the system and advocate for Jessica because of the knowledge she gained from the journey with Amanda. In 2006, Jessica was diagnosed with Autism, and Darcy and her family began to walk an entirely new path. Since 2010, both daughters have struggled with mental health diagnoses.
Darcy began her volunteer efforts at Boston Children’s Hospital by lending her voice to the Family Education Steering Committee for one year, and then joined the hospital-wide Family Advisory Council in 2014. In 2016, Darcy joined the Boston Children’s Hospital Autism Family Advisory Council, as well as the Psychiatry Family Advisory Council. Darcy is also a 2014 Boston Children’s Hospital Leadership Education in Neurodevelopmental Disabilities (LEND) Family Fellow Graduate.
Darcy, her husband Michael, son Jack, and daughters Amanda and Jessica live north of Boston. Darcy enjoys time with her family and friends, reading, and the ocean.
Member since: 2009
Experience/Areas of Interest: Primary Care, Emergency Department, Transition of Care.
About Denyce: Denyce is the mother of two children, both of whom have received care at Boston Children’s. Her eldest, a young adult daughter named Dee, received primary care here. She also battled severe childhood asthma and frequented the Emergency Department for treatment of that condition. Denyce’s son, Colby, currently receives primary care services at Boston Children's.
In addition to being a member of the hospital-wide Family Advisory Council, Denyce also serves on the Children’s Hospital Primary Care Center Family Advisory Council, a group she joined in 2012. Denyce and her siblings grew up in Brookline, MA and all received primary care at Boston Children’s Hospital.
Member since: 2014
Experience/Areas of Interest: Spina bifida, complex care.
About Aimee: Aimee Williamson is the mother of two children, Colton and Lena. She and her husband, Rob, lived in Colorado when both children were born, Colton in 1994 and Lena six years later. While Colton experienced little aside from common childhood issues, Lena was born with a lipomyelomeningocele, a form of spina bifida occulta. After an initial detethering surgery at 7 weeks old to separate her spinal cord from the lipoma it was embedded within, the early years were relatively uneventful and related medical problems were well controlled.
In 2007, the family moved to Massachusetts and Lena has received care at Boston Children’s ever since. Initially, this just meant regular check-ups, but in 2011, Lena began experiencing symptoms that ultimately led to three more detethering surgeries over the next few years. Related losses of function and complications have required multiple surgeries, hospitalizations, and visits with many specialists and departments throughout the hospital. Despite these challenges, Lena is thriving. She is an involved student, serves as a member of the hospital’s Teen Advisory Committee, and plans to be a medical professional herself someday.
Aimee is grateful for the dedication, kindness, and responsiveness of physicians, nurses, and other staff across the hospital. She joined the Family Advisory Council as a way to give back to the hospital for all the time and effort providers have given to her family over the years. As a public administration professor with work related to children’s issues and a board member of the Spina Bifida Association of Greater New England, Aimee has also found that the experience serves as a rewarding connection between her personal and professional interests.
Learn more about Aimee's daughter, Lena and the Teen Advisory Committee on our patient and family blog, Thriving.
Read "My sister, my inspiration" - a blog post written by Aimee's son, Colton.