For Patients & Families | Family Advisory Council Members

Natasha Aljalian (emeritus member)

• Member since: 2016
• Experience/areas of interest: pediatric hematology/oncology, Dravet syndrome/neurology/epilepsy/rare disease, research, clinical trials, Emergency Department, Child Life

Natasha Aljalian is mom to Gabriel (born 2008) and Mary (born 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 three 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 for the care that Gabriel and Mary have received from almost every department at Boston Children’s. She feels fortunate to have formed partnerships (and friendships) with her children’s care providers, and she has appreciated being a valued member of the team for her children’s treatment plans.

Natasha joined the Family Advisory Council to share her insights as a patient parent and to partner with Boston Children’s in working to improve aspects of the care experience for all patients and families. She is also a member of the Boston Children’s E-Advisors Program.

• Read about Natasha

Brenda Allair (emeritus member)

• Member since: 2012
• Experience/areas of interest: pediatric solid organ transplant, rare diseases, palliative care, visual impairment/blindness and complex health needs, transition to adulthood

Brenda is the parent of three young adult children, including her youngest, Jill, who was born with a rare genetic condition, WDR-19 related disorder. Jill was initially seen at Boston Children’s Hospital when she was just 8 weeks old, and she has continued to be supported by the physicians, nurses and other staff in multiple outpatient clinics over the years. Jill had a kidney transplant when she was 15 months old, and in 2020 she received a liver transplant. Jill is followed closely by Pediatric Transplant Center, and over the years Brenda and her family have developed friendships with other Boston Children’s Hospital transplant families. Having experienced over two decades of care with Jill at Boston Children’s, Brenda is grateful to the many clinicians, staff, and other providers who bring compassion, humor, dedication, and excellence in care to their work every day.

Brenda joined the Family Advisory Council in 2012 to support the hospital’s many initiatives to increase parent and family engagement and leadership. Brenda is passionate about creating and sustaining programs and initiatives that support the needs of diverse families and highlighting the needs of families and caregivers of children with complex medical needs.

Ronny V. Bachrach

• Member since: 2024
• Experience/areas of interest: Rheumatology, Pulmonology, Infusion Center, Nephrology, Inpatient Care, Poly Pharmacy (managing multiple medications and pharmacies), Ophthalmology, Outpatient visits, Immunology, rare diseases, autoinflammatory diseases, immune suppression, radiology/imaging

Ronny is mom to Sam (born in 2018). Before her second birthday, Sam was diagnosed with a rare form of systemic arthritis called systemic juvenile idiopathic arthritis (SJIA). Since diagnosis in 2020, Sam has had multiple inpatient stays and was subsequently diagnosed with a secondary diagnosis of Interstitial lung disease (ILD). Due to the complicated nature of treating a systemic rare disease with multiple medications, she is followed by multiple specialty clinics within Boston Children’s. She routinely sees rheumatology, pulmonology, nephrology, and ophthalmology, among others.

Since Sam’s longest inpatient stay of two months in 2021, Ronny has been interested in opportunities to try to both improve hospital services and help other parents within the hospital system. Currently, Sam receives most of her Boston Children’s care at the Waltham location, including monthly trips to see her favorite nurses at the infusion center.

Ronny, as a type 1 diabetic and as a mom to Sam, is passionate about improving experiences for patients and families. She joined the Family Advisory Council to represent her family and others by bringing personal experiences into improvement efforts in partnership with Boston Children’s. Ronny also serves on the Emergency Department FAC and as an E-Advisor.

Katie Baker

• Member since: 2019
• Experience/areas of interest: tracheobronchomalacia, airway stents, endocrinology, common variable immune deficiency, CAT/CR, IVIG, neurology, neuro-opthamology, neuroimmunology, hemicrania continua, intracranial hypertension, feeding/swallowing disorders, hematology, genetics, allergy, G-Tube

Katie lives in Boston with her husband, Rick, and son Jack. Following his birth in 2015, Jack was admitted frequently to another Boston hospital for respiratory illness. In 2017, without answers as to why Jack’s health was so poor, Katie and Rick brought Jack to Boston Children’s, where they found out that Jack had been born with several airway abnormalities. Since then, Jack has had many surgeries to fix parts of his airway and his lung. Jack also receives care for neurology challenges and has an immune deficiency that brings him to Boston Children’s for monthly treatment.

Katie serves on the FAC because she wants to leverage her experiences at Boston Children’s Hospital and elsewhere to help improve aspects of the patient and family experience for others. Katie sees this as her opportunity to give back to a hospital that has been life changing for her family. Since joining the FAC in 2019, Katie has taken part in many projects that have had direct impacts on the care that Jack and other patients receive at Boston Children’s. This is something that Katie finds incredibly rewarding. She also serves on the Emergency Department FAC and E-Advisors Program.

Kate Bazinsky (emeritus member)

• Member since: 2019
• Experience/areas of interest: hematology, emergency medicine, infusion therapy

Kate is the mother of two children. In 2017, her 16-month-old son was diagnosed with severe hemophilia A, a genetic bleeding disorder for which there is no cure. Due to the outstanding care that her son has received from Boston Children's Hospital, he is thriving today. Kate joined the Family Advisory Council in 2019 with the hope of using her family's experience to improve the care and experiences of other Boston Children's families.

• Read about Kate Bazinsky

Jackey Bennett

• Member since: 2021
• Experience/areas of interest: pediatric nephrology, endocrinology, genetics, nephrotic syndrome, chronic kidney disease, autism, neurodiversity, non-speaking patient advocacy, CAT/CR, creating a sensory friendly environment

Jackey is mom to Keith (born 2016), who has two rare diseases: nephrotic syndrome, a protein-spilling kidney disease, and Chromosome 15q11.2-13.1 duplication syndrome (Dup15q), a genetic abnormality causing autism and intellectual disability. Keith is followed by the Boston Children’s renal team and spent much of 2019 and 2020 either inpatient or visiting the hospital for frequent infusions. Keith is also followed by Genetics as more is learned about his 15th chromosome duplication.

The Bennetts are grateful for the wonderful care Keith receives at Boston Children’s. Keith has been able to have some fun experiences at the hospital, including making gingerbread houses with Rob Gronkowski, visiting Santa, and a fourth birthday party from the CAT/CR nurses.

Jackey joined the Family Advisory Council because she has a passion for advocacy and an immense appreciation for the staff at Boston Children’s and their efforts to create a positive healing environment. She aims to give back by serving as a voice for families of children with unique sensory and communication needs in conversations about improvement efforts across the hospital. Jackey also wishes to empower parents to access the services their children need, through partnership with Boston Children’s staff who provide care and comfort to patients and families, in order to create a positive and trauma-free experience for their kids.

Jackey; her husband, Tony; and son Keith live in Windham, N.H.

• Read about Jackey and her family

Chava Bolotin

• Member since: 2020
• Experience/areas of interest: GI, feeding disorders, swallowing disorders

Chava is a wife and mom to three children, two boys and a girl. Shortly after her middle child was born, both of her boys started seeing the Aerodigestive Center for feeding challenges. Right from the first appointment, Chava was impressed at how collaborative the doctors were, and how they incorporated her questions and concerns in the treatment plan. She knew right away that Boston Children's would be a place of healing and hope for her boys. The youngest of her three children, a daughter, also receives care at the Boston Children’s Aerodigestive Center.

Chava wants to use her own experiences at Boston Children’s to help make patient and family experiences even better. She joined the FAC to help ensure families feel supported and heard.

Chava lives with her husband and kids in south Florida, where she is involved in the Jewish community and is raising her children.

Lisa Burgess (emeritus member)

• Member since: 1989
• Experience/areas of interest: multi-complex care, palliative care, home care nursing, research, clinician/family communication, government relations, SIM Lab teaching and technology, transition, anticipatory grief/bereavement

Lisa has been married for 30 years to her husband, Mark, and is the mother of three sons who have all received care at Boston Children’s. Lisa’s eldest son, Benjamin, was a patient in Primary Care and Ophthalmology. Her middle son, Jamie, has been a multi-complex patient since 1985, and her youngest son, Dakota, was diagnosed with autism.

Lisa’s passion for true family-centered care for medically complex patients began in the mid-1980s, shortly after the birth of Jamie. His journey includes 24 diagnoses (primarily cardiac, pulmonary, renal, neurological, and immunological) and many years later, a diagnosis of an extensive chromosome deletion. Jamie has had more than 500 admissions and continues to have multiple appointments at Boston Children’s, although some of his care was transitioned to an adult hospital in Boston.

Lisa has more than three decades of experiential knowledge helping families navigate the system, from scheduling appointments to finding a range of supports. Lisa believes that empathy and communication are key tenets of patient- and family centered care, as evidenced with her children and countless others. She has worked on many projects during her time on the council, including Family Centered Rounds, the Children’s Hospital Advocacy Network Legislative Breakfast in Washington, D.C., and Aligning Family-Clinician Expectations During Pediatric Surgical Informed Consent.

Serving as member of the Family Advisory Council and E-Advisors program, Lisa has found ways to help make meaningful change for the patients and families that come to Boston Children’s for answers every day.

Lisa Cleary

• Member since: 2021
• Experience/areas of interest: pediatric oncology/neuroblastoma, bone lesions, hematopoietic bone marrow transplants, endocrinology, allergy, dermatology, MIBG/CT/MRI/z-ray, neurology/developmental delays, urology, ophthalmology, orthopedic, cardiology/EKG/Lipid clinic, audiology/otolaryngology, in/outpatient surgery, home care, central line care, long-term inpatient stays

Lisa Cleary lives in Franklin with her husband, Greg, and her two boys, Jack and Nicholas. In April 2015, 22-month-old Nicholas was diagnosed with stage 4 high-risk neuroblastoma. He immediately started his treatment on the oncology unit at Boston Children’s Hospital, in conjunction with the Jimmy Fund Clinic. Nick has been in remission since 2016 and is thriving. He is followed by multiple specialists at Children’s to manage side effects and other medical issues. In 2017, Jack, then 7, was diagnosed with a bone cyst after breaking his wrist. He is doing great after several procedures, under the care of the Orthopedic Specialists. Lisa felt humbled by the overwhelming support from the staff since day one, and found comfort in how much the care providers valued parental opinions and feedback.

Since 2015, Lisa has connected with and advocated for many families whose children are battling cancer. She has also been involved with several fundraisers and awareness projects for Boston Children’s Hospital, her favorite being Moms on a Mission, co-founded by Lisa and other “momcologists” whom she met during their children’s treatment. Lisa joined the Family Advisory Council as a way to give back to the organization that not only saved her son, but helped her family cope during their darkest days.

Alisha Durant

• Member since: 2022
• Experience/areas of interest: autism, Ehlers-Danlos syndrome, Opthalmology, Blue Cone Monochromacy, Metabolism Program, Psychiatry, Rheumatology and Neuro Immunology, homeschooling

Alisha is mom to four amazing boys, all of who have received care at Boston Children’s. Alisha’s eldest son often needed care for illnesses as a young child. Her three younger boys have Ehlers-Danlos syndrome, a condition that effects their connective tissues, and autism. Alisha’s youngest two sons have retinal disease, and one of the boys has bipolar disorder, OCD, and additional challenges. Homeschooling plays a big part in this family’s life and how Alisha navigates the boys’ medical needs.

Alisha has years of experience coordinating the complicated care her sons need at multiple hospitals and medical practices. As the list of medical specialties supporting her sons continued to grow and their needs became more complex, she decided to bring her sons’ care under the umbrella of Boston Children’s.

Alisha joined the Family Advisory Council to represent her family and others in conversations that will impact Boston Children’s efforts to improve care experiences across the hospital.

Steve Favulli

• Member since: 2019
• Experience/areas of interest: congenital hypothyroidism, managing chronic conditions, Milagros Para Ninos, transition of patients returning to school after extended absence

Steve is the proud father of four wonderful children. He and his wife. Lauren, consider themselves incredibly fortunate to have had the opportunity to bring their oldest son to Boston Children’s Hospital when he was diagnosed with congenital hypothyroidism at just 5 days old. As new parents, they were anxious and unaware of what this would mean for their baby boy and their family, but knew that the best place to support him moving forward was Boston Children’s Hospital. At their first meeting in the Endocrine Clinic, Steve and Lauren were overwhelmed with the compassion and support of their son’s care team. The time spent educating Steve and Lauren, reassuring them as new parents, and simply listening to their questions and thoughts is something that they haven’t forgotten.

Steve’s position on the FAC is one that represents his family’s appreciation for Boston Children’s and all that the hospital provides to families. At the same time, it is a way for his and Lauren’s passion for Boston Children’s to be shared with others.

Valerie Fleishman (emeritus member)

• Member since: 2012
• Experience/areas of interest: liver disease, GI clinic, radiology, endocrine, emergency department, digital health, care coordination, patient and family experience, patient safety and quality

Valerie is the mother of two children. In 2004, at just 8 weeks old, her son was diagnosed with biliary atresia, a rare, chronic liver disease. He underwent immediate surgery at Boston Children’s and later, in 2017, received a new liver. He continues to be cared for by the Gastroenterology and Transplant teams and serves on the hospital's Teen Advisory Council.

Valerie served as past parent co-chair and serves on the Patient Care Assessment Committee. Her 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 with Boston Children’s to improve the patient and family experience.

She lives in Newton, Mass., with her husband and two children.

Kevin Flynn

• Member since: 2023
• Experience/areas of interest: cerebral palsy, neurology, infectious diseases, orthopedics, audiology, deaf-blind, complex care, durable medical equipment, augmentative communication, cortical visual impairment

Kevin and his wife, Katie, live in Boston with their two daughters, Tessa and Molly. Their introduction to Boston Children’s Hospital came after Molly was exposed to a virus in utero called CMV, which subsequently resulted in global developmental delay, a cerebral palsy diagnosis, epilepsy, and a level of dual sensory loss that qualifies as deaf-blind. Molly spent 78 days of her first year at Boston Children’s with appointments in dozens of departments. Thanks to her exceptional care at Boston Children’s, Molly is the happiest and sweetest 5-year-old. She is surrounded by love and world-class care at her hospital and her school, the Perkins School for the Blind.

After being inspired by the families he met through Molly’s journey, Kevin began working at a nonprofit, Team IMPACT, that matches children living with serious diagnoses or disability with college sports teams for a two-year therapeutic mentoring program. Team IMPACT works on 700 campuses in 50 states, and more than 60,000 student-athletes have participated in the program.

Kevin has been an E-Advisor at Boston Children’s and is thrilled to serve on the Family Advisory Council to help ensure as many families as possible can access the exceptional care his family received.

John P. Kornack Jr.

• Member since: 2024
• Experience/areas of interest: Kawasaki disease, acquired heart disease, cardio antithrombosis management, autoimmune disease, autoinflammatory disease, chronic inflammation, outpatient medicine, cardiac neurodevelopment program, early intervention, care coordination, long-term inpatient stays.

John and his wife, Lauren, reside in the suburbs of Boston with their son Trip and their daughter Evelyn. The Kornacks were first introduced to Boston Children’s Hospital when Trip, at 4 months old, contracted a serious high fever, accompanied by a full body rash and swollen red eyes. Their doctor and hospital had no answers as the fever extended past seven days and Trip was transferred to Boston Children’s Hospital to be tested for Kawasaki disease. An echocardiogram confirmed their son had the disease, which is the No. 1 cause of acquired heart disease for children. Trip developed aneurysms in his left and right coronary arteries, and he spent more than a month at Boston Children’s under the care of both cardiology and rheumatology. Trip is doing a lot better thanks to care of Boston Children’s, and John hopes to leverage his experience as a patient parent to provide guidance and key insight to the council.

Amanda Lane

• Member since: 2023
• Experience/areas of interest: trauma, foster care, adoption, transracial families, behavioral health, in-hospital Behavior Support Plan, reactive attachment disorder, ADHD, anxiety, depression, cerebral palsy, laryngeal cleft, psychology, TF-CBT (trauma-focused cognitive behavior therapy), neurology, constipation, early intervention, IEP, mild diagnoses, mandated reporting, legal process

Amanda is the proud mother of two children. She and her husband began the process of becoming licensed foster parents in 2014. Their first emergency placement completely changed the trajectory of their lives. Amanda quickly transitioned from working full-time to being a stay-at-home parent of a medically complex child for the next six years. His adoption was finalized roughly a year and a half into the process, after which Amanda and her husband welcomed a compassionate, loving 8-year-old girl into their family, who they also adopted. Together their family has tackled numerous therapies, including TF-CBT (trauma-focused cognitive behavior therapy). Both children have regular contact with their biological families — a connection she and her husband eagerly support.

Amanda is aware of the complex challenges parents and guardians may face while raising children who have experienced significant trauma. She is especially passionate about supporting other foster and adoptive families, centering adoptee voices, honoring birth family connections and culture, the importance of quality behavioral health, and the intersection of faith and advocacy. She and her family live north of Boston and are incredibly grateful for their care team at Boston Children’s.

Jinah Lee

• Member since: 2022
• Experience/areas of interest: intensive care unit, inpatient care, experimental therapeutics unit (clinical trial unit), psychiatry, chronic fatigue, sleep apnea, complex chronic illness, autism spectrum, vascular anomalies, increasing awareness about special needs through education

Jinah is the mother of two boys, Noah (born 2000) and Isaac (born 2004). Isaac, born with his medical condition, was called “an enigma” by his doctors in Australia, who later named his condition PUVA — previously unnamed vascular anomaly.

In 2015, Jinah and her family relocated from Melbourne, Australia, to the Boston area so that Isaac could receive care through the Boston Children’s Vascular Anomalies Center. At age 15, after many tests over a number of years, Isaac was diagnosed by his Boston Children’s team with PROS — Pik3ca overgrowth spectrum, a genetic mutation that is a major part of his healthcare.

Jinah, who spends much of her time managing Isaac’s medical care and education, joined the Family Advisory Council as a way to give back. As a family advisor, Jinah shares her thoughts, feedback, and pieces of her family’s journey so that they can be woven into improvements here at Boston Children’s.

Esterlina MacInnes

• Member since: 2017
• Experience/areas of interest: integration care, kidney disorders, G-tube, feeding/swallowing difficulties, vision impairment, speech/AAC, home care nursing, complex care

Esterlina is a mother of a young son named Ian. At 4 months old, he was diagnosed with Lowe syndrome, a rare genetic condition that affects the eyes, the kidneys, and the brain. Since her son’s first surgery at 5 weeks, Esterlina has spent countless hours navigating Boston Children’s Hospital, including inpatient, ambulatory, and ER, as well as therapy services. She is grateful for the excellent attention and care she and her son have received at Boston Children’s.

As a result of her journey with her son, Esterlina decided to embark on a new career helping families going through similar circumstances. To complement her personal experience, in 2016, she completed the Leadership Education in Neurodevelopmental and other Disabilities (LEND) Program at Boston Children’s. This is a multidisciplinary, family centered fellowship that covers health and cultural issues related to disabilities, public resources, and policy initiatives. In 2017, Esterlina joined Boston Children’s as an employee, taking on the role of Family Partnerships Coordinator, concentrating her work on developing projects to support and empower Latino patient families who receive care here at the hospital.

Esterlina lives with her husband and son in Medford, Mass., where she advocates for her family within the education system, as well as community and social activities. But, especially, she continues coordinating the care of her son’s complex health condition.

• Read about Esterlina and her family

Ali Mahady

• Member since: 2023
• Experience/areas of interest: rare diseases, cortical visual impairment, epilepsy, complex medical conditions, genetics, undiagnosed genetic diseases, endocrinology, ENT, AAC, developmental delays, feeding and swallowing disorders, physical therapy, occupational therapy, speech therapy, feeding therapy

Ali is the mother to a 4-year-old boy, Weston. Weston was born with a rare genetic disease that came with epilepsy, cortical visual impairment, brain abnormalities, hypothyroidism, and global delays, as well as two other rare conditions and many other abnormalities and medical issues. To date, Weston is the only one in the world with his condition, and there have not been overarching diagnoses found for him. Ali has spent the last four years navigating the coordination of care and various applicable state resources for her medically complex son. Weston is followed by about 20 departments at Boston Children’s Hospital, all of which provide him excellent care and help him to thrive. Weston is also in several research studies, including the Undiagnosed Diseases Network, to which Boston Children’s Hospital referred him. Ali and her husband are beyond thankful for the excellent care Weston receives at Boston Children’s Hospital.

Ali joined the Family Advisory Council to give back to the hospital that has done so much for her family. She also looks forward to helping other families on their journey at Boston Children’s and hopes to make the process easier for them. Ali is honored to be able to give back to the hospital by serving on the Family Advisory Council. Ali and her husband, Patrick, live with Weston outside of Boston.

Emily Martins (emeritus member)

• Member since: 2019
• Experience/areas of interest: NICU, prematurity, inpatient stays, home care, necrotizing enterocolitis, surgery, ophthalmology, and neurology

Emily lives in Franklin, Mass., with her husband, daughter, and son. Emily’s daughter became a patient at Boston Children’s Hospital when she was born prematurely and developed necrotizing enterocolitis (NEC) at just 5 days old. In total, Emily’s daughter underwent four surgeries and was inpatient for 10 weeks. She received follow-up care with various Boston Children’s specialties for needs resulting from her prematurity.

Emily and her husband feel eternally grateful for the care their daughter received at Boston Children’s Hospital, and feel confident that their daughter is alive and thriving because of the incredible treatment at Boston Children’s Hospital. Emily is honored to be able to give back by becoming involved with the Family Advisory Council. She is also a member of the Boston Children’s Hospital E-Advisors Program.

Susan McCarthy (emeritus member)

• Member since: 2017
• Experience/areas of interest: complex medical care, pediatric palliative care, home care nursing, epilepsy, home parenteral nutrition program, and bereavement

Sue lives in Walpole with her husband, Joe, and is a mom to three children: Matthew, Daniel, and Caitlin. At the age of 1, Caitlin was diagnosed with mitochondrial disease and at the age of 5, with Rett Syndrome. Caitlin spent a great deal of time at Boston Children’s, both inpatient and outpatient, and received excellent care from the Gastroenterology, Epilepsy, Complex Care, Palliative Care, Neurology, Nephrology, Orthopedics, Endocrine, Home Parenteral Nutrition, and the C.A.P.E team. Sadly, Caitlin passed away in March 2020. Sue and Joe remain deeply grateful to all of the doctors and nurses at Boston Children’s who cared for Caitlin for so many years, and look forward to continuing to support the hospital.

Sue is particularly passionate about projects which aim to help children with complex medical needs both inpatient and at home. In many ways, Sue pioneered a hospital-at-home model for Caitlin, doing the research and advocacy work so that Caitlin’s needs were met and so that Caitlin was able to live as normal a life as possible at home with her family. Sue hopes to use her knowledge and experience to help other families in similar situations.

Connected with her work as an FAC member, Sue currently serves on the Practice, Quality, and Outcomes Council and the Safety Committee for Central Lines and Catheters. In 2019, she presented alongside Boston Children's safety and quality leaders at the 2019 Patient Safety Forum. Sue also lends her voice through the E-Advisors Program.

Sarah Morris

• Member since: 2012
• Experience/areas of interest: tracheostomy, G-Tubes, home nursing, durable medical equipment navigation, NICU/ICU, coordinated care, parent-to-parent networking, esophageal atresia, infusion therapy, medical coping psychology, laryngeal cleft, posterior tracheopexy, pain clinic, and Children’s Miracle Network

Sarah Morris is the proud mother of twins, Drew and Emma, born prematurely in 2008. Emma has spent more than 400 nights at Boston Children’s Hospital. Emma was born with esophageal atresia, a type 3 laryngeal cleft, and a primary immune deficiency that brings her to Boston Children’s for monthly infusions. Emma has been able to receive multiple lifesaving surgeries that were first performed at Boston Children’s Hospital.

Sarah has had to learn how to care for a child who does not fit under one specific diagnosis and the post-traumatic stress that comes with it. She has become a strong advocate for her children and is able to skillfully navigate the medical world. She has also worked alongside the Boston Children’s government relations team to help support growth within the hospital. She feels that, as a caregiver, she has been given one of the most amazing jobs which brings surprises every day.

Giving back to Boston Children’s Hospital has always been a priority for Sarah and her husband. Both are former members of the NICU Family Advisory Council and both have found individual avenues over the years to bring the parent voice into different areas of the hospital. Emma has learned to share her story over time. She was named the Boston Children’s Miracle Network Champion for 2020 and 2021.

• Read about Sarah and her family

William O’Donnell (emeritus member)

• Member since: 2012
• Experience/areas of interest: pulmonary hypertension, cardiology, high reliability organization

Bill lives in Medford, Mass., 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.

Erin Poirier (parent co-chair)

• Member since: 2019
• Experience/areas of interest: rare genetic conditions, autism, assistance with non-verbal communication, epilepsy

Erin Poirier is a wife and mother of two daughters, Lily and Elise. At very young ages, both girls presented with developmental delays, physical delays, and epilepsy, and were also non-verbal. For many years Lily and Elise were considered “mysteries” to their team in the Neurology Department at Boston Children’s. After 6½ years of searching, both girls were diagnosed with a rare genetic condition called SYNGAP1. Currently, Lily and Elise are two out of 250 individuals in the world with this diagnosis and only the second known sibling set. Erin and her husband, Andrew, are grateful for both the expertise and persistence of their Boston Children’s team for finding the answer to their question of “why?”

Erin joined the Family Advisory Council as a way to help other families on their journey at Boston Children’s and to have a voice in a place that matters most to her family.

• Read about Erin

Padmaja Raman

• Member since: 2020
• Experience/areas of interest: complex care, managing a home “ICU” setting, IEP for cognitively fine physically disabled children, coordination between physicians, specialty drug, insurance, infusion, respiratory, enteral, home care

As a mother to a complex care child with an orphan disease called infantile pompe, Padmaja has been in immersed in complex care and related issues for over a decade. For her, the lobby of Boston Children’s is the "lobby of hope." It is truly humbling to see the depth of skills, dedication, and commitment of the physicians and staff to help children with various disorders. Seeing this "mission"-driven work is what motivates Padmaja to volunteer at Boston Children’s.

Padmaja and her family experienced a steep learning curve as one of the first patients at Boston Children’s dealing with an orphan disease that was administered a life-saving therapy under clinical trials. The drug has since been FDA approved and continues to be administered through infusion.

The outstanding and continuing support of various physicians and staff has helped Padmaja’s family to navigate this unique journey.

Suzanne Roma

• Member since: 2022
• Experience/areas of interest: Stroke, Hemiplegia, Botox, CIMT, Orthopedics/Physiatry, Stroke and Cerebrovascular Center, NICU, Neurology, Physical/Occupational Therapy, Boston O&P (orthotics/bracing), Opthalmology, Early Intervention, transition to public school, and coordination of care

Suzanne lives in Boston's Metrowest with her husband and their two children. Her son is a perinatal stroke survivor who has been followed by his team at Boston Children’s Hospital since he was just a few days old. Suzanne and her family have a very deep appreciation for their son’s care team who have consistently and compassionately worked together, even across medical specialties, to allow him to thrive.

Finding a way to give back to Boston Children’s Hospital is an important piece of the journey for Suzanne. She has spoken at the Stroke and Cerebrovascular Center’s family day to share her son’s experiences with other families of stroke survivors. As a FAC member, Suzanne is excited by the opportunity to work with other family advisors and hospital staff to improve care experiences for patients and families who come to Boston Children’s. Suzanne is also a member of the hospital’s E-advisors Program. On the weekends she enjoys being with her family, outdoor adventures, fixing up the family's old farmhouse, and traveling.

Maria Alice Melo de los Santos

• Membro desde: 2022
• Experiência/areas de interesse: Atenção Primária, Centro de Cuidados do Cérebro, Genética, Centro de Autismo, Pronto-Socorro, Alergia e Imunologia, Cardiologia, Odontologia e cuidado de criança com situação médica complexa.

Maria Alice reside em Worcester, MA com seu marido, seu filho, Benjamin, e sua filha, Catherine, ambos os filhos são pacientes do Hospital Infantil de Boston. O filho mais velho de Maria Alice, Benjamin, recebe o maior e o mais especializado cuidado, pois nasceu com uma rara Síndrome Genética causada pela alteração do cromossomo 11q23-q25. Ben é paciente do Hospital Infantil de Boston desde 2016, quando tinha apenas 1 ano e 8 meses de idade. Maria Alice e sua família se mudaram do Brasil ao Estados Unidos, para que Ben recebesse os cuidados dos 10 especialistas que continuam cuidando dele. Como o idioma que falam é o português, a equipe do Boston Children's Interpreter Services (Serviços de Intérpretes do Boston Children Hospital) desempenhou um papel fundamental no apoio a Maria Alice e sua família no acesso a cuidados médicos para seus filhos.

Maria Alice e sua família são imensamente gratos por TODOS os cuidados, desde cirurgias, a serviços de emergência, até cuidados de rotina, serviços de interpretação e tradução que receberam ao longo do caminho. Maria Alice sente uma grande satisfação e alegria em fazer parte da FAC (Conselho Consultivo da Família), e conhecer a fundo o trabalho desenvolvido com muito amor e empenho por todos os colaboradores do Boston Children's Hospital, e poder compartilhá-lo com sua comunidade. Ela sente que é o mínimo que pode fazer, para retribuir todo o cuidado que este maravilhoso hospital, fez e continua a fazer por sua família. Obrigada.

• Member since: 2022
• Experience/areas of interest: Primary Care, Brain Center, Genetics, Autism Spectrum Center, Emergency Department, Allergy and Immunology, Cardiology, Dentistry, and caring for a medically complex child

Maria Alice lives in Worcester, Mass., with her husband, their son, Benjamin, and their daughter, Catherine, who are both Boston Children's Hospital patients. Maria Alice’s eldest child, Benjamin, receives the greatest and most specialized care, as he was born with a rare genetic syndrome caused by the alteration of Chromosome 11q23-q25. Ben has been a patient at Boston Children's Hospital since 2016 when he was just 1 year, 8 months old. Maria Alice and her family moved from Brazil for Ben to receive care from the 10 specialties who continue to care for him. As Portuguese speakers, the Boston Children’s Interpreter Services team has played a critical role in supporting Maria Alice and her family as they access medical care for their children.

Maria Alice and her family are immensely grateful for ALL the care, from surgeries to emergency services to routine care to interpretation and translation services, that they have received along the way. Maria Alice feels great satisfaction and joy to be part of the FAC, to know in depth the work developed with much love and commitment by all the employees of Boston Children's Hospital and to be able to share it with her community. She feels that it’s the least she can do to repay all the care that this wonderful hospital has done and continues to do for her family.

Margot Schwartz

• Member since: 2023
• Experience/areas of interest: Craniofacial conditions, surgery, NICU, hearing loss, complex airways, sleep apnea, feeding/G-tube, patient safety, caregiver mental health.

Margot and her amazing daughter Maya both have bilateral craniofacial microsomia. Maya was diagnosed when Margot was 20 weeks pregnant and their family’s journey at Boston Children’s began through the Maternal Fetal Care Center. Since then, Maya had a three-month hospital stay at birth, multiple surgeries and complications, and spent plenty of time at Children’s in both inpatient and outpatient settings. Margot joined the Family Advisory Council to improve the experience for families navigating the challenges and joys of medically complex children. She also developed severe PTSD as a caregiver and seeks to help others prevent and manage caregiver mental health hurdles.

Margot lives in Brookline with her husband, Glen, Maya, and their dog, Fletcher. They are grateful to live within walking distance of the wonderful team at Children’s. Margot previously volunteered on the Beth Israel Deaconess NICU Family Advisory Council, and as a member of the Consumer Quality Council at Health Care For All. She enjoys collaborating with patients, families, and providers to improve the quality of care, and looks forward to doing so as a member of the BCH Family Advisory Council.

Erin Sullivan

• Member since: 2018
• Experience/areas of interest: cardiology, in- and outpatient visits, transition to adult care, Boston Adult Congenital Heart (BACH) and Pulmonary Hypertension Team

Erin Sullivan has been a patient at Boston Children’s Hospital since the day she was born. Erin had open heart surgery at 3 months old and has been followed by Boston Children’s cardiology ever since, requiring the expertise that cardiologists trained in both pediatrics and adult cardiology can provide.

Erin is grateful for the excellent care she has received at Boston Children’s Hospital. Erin volunteered at Boston Children’s Hospital during high school and college, and joined the Family Advisory Council to bring her patient perspective to the group.

Erin has spent most of her career in healthcare research and education. In her free time, she enjoys running, spinning, yoga, and adventures with her partner, Matt, and miniature golden doodle, Sully.

• Read about Erin

Maria Valencia-Devin

• Member since: 2024
• Experience/areas of interest: Chronic kidney disease, end-stage kidney disease, renal transplant therapy, transplantation, post-transplantation, peritoneal dialysis, intermitted hemodialysis, G-tube nutrition, and critical care assistance. Instructional design, learning experience, design, technical training, learning, and development. Education program support and coordination.

Maria Valencia-Devin gave birth to Simon in 2013. Simon was born with polycystic kidney failure and received a transplant 18 months later.

Maria's goal is to recognize families making a difference in the lives of children with chronic illnesses. Through her work as an MVP Mom at Team Impact and Transplant Research, she is raising awareness and sharing her experience of the transplant lifestyle with others. Her dedication to helping others is truly a form of gratitude, and her efforts are to share the light throughout the transplant journey.

Maria lives with Simon, and they love traveling and exploring new places. They believe that traveling is a great way to learn and grow. Simon has been a part of the Northeastern men's hockey team for a few years, and has earned immense love and respect from players and coaches. Being a part of the hockey team has been a wonderful experience for the whole family. It has enriched their lives and brought them immense joy.

Aimee Williamson (emeritus member)

• Member since: 2014
• Experience/areas of interest: spina bifida, neurosurgery, orthopedics, urology, plastic surgery, complex care

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. Lena was born with lipomyelomeningocele, a form of spina bifida. After an initial surgery at 7 weeks old to untether her spinal cord, Lena’s medical challenges were well controlled for most of her early years.

In 2007, Aimee and her family moved to Massachusetts, and Lena has received medical care at Boston Children’s ever since. A growth spurt uncovered a retethering of her spinal cord in 2011, with new losses in function. Lena’s medical needs became more frequent and more impactful to her daily life, often requiring surgeries, hospitalizations, and frequent visits to her Boston Children’s specialists.

Throughout these challenges, Boston Children’s has supported the family clinically and beyond, giving Lena every chance to thrive. Lena previously served as a member of the Boston Children’s Teen Advisory Committee, and is now navigating much of her medical care independently as a young adult.

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. Currently serving as the parent co-Chair, Aimee has been involved with a variety of Boston Children’s committees and projects over the years, including work related to patient experience, access, research, and safety.