Pediatric Family Advisory Council

Newborns, children, adolescents, and young adults... they have different needs, wants, views, and feelings than adults. Our hospital leadership and clinical teams have long understood this and have partnered with families to provide the best possible care and experience. After all, who knows their children best?

Many years ago, we established the Pediatric Family Advisory Council (PFAC). Services, programs, processes, and care all have been improved as a result. The PFAC offers invaluable insight into the care we deliver and how we deliver it.

PFAC members are actively involved. They serve on hospital committees. They lead parent support groups for different childhood illnesses and provide a unique resource to our families. By sharing theirs and other families' experience with us, we can continue to improve, with the ultimate goal of making a family's experience in the hospital the best it can be.

Important Initiatives Our Pediatric Family Advisory Council Has Impacted

• MyChart is the patient portal into her/his own electronic medical record. Our PFAC members have provided crucial input into making sure the system provides what patients and families need.
• GetWell Network is an interactive educational and entertainment system available to all of our patients and families from their hospital beds.
• PFAC members have donated many hours providing input into the design of the new hospital which was built in 2015. They continue to give input as new services and processes are developed.
• Members have also shared feedback on food in the cafeteria, space in the Emergency Department and the on-going work to develop a app for the hospital.

We Welcome Your Involvement

By developing and fostering these partnerships, the Golisano Children's Hospital is better able to serve the families of our community. We welcome your involvement. Meetings are held monthly. To become involved contact: Carla LeVant, Senior Social Worker, Golisano Children’s Hospital at (585) 273-5445.

Current PFAC Members

• Carla LeVant, LMSW, Senior Social Worker
• Julie Michels, R.N., M.S.
• Emily Ferro, R.N.
• Jennifer Johnson, Director of family and Community Outreach

Family Contributors

Nanci Bentley

Nanci joined the Parent Advisory Council in 2021. Nanci and her husband Mike are the proud parents of MJ who was diagnosed at UR Medicine Golisano Children’s Hospital with Pallister Killian Syndrome at six months old. MJ has had cataract removal surgery, three major hip surgeries, a continuing comprehensive treatment plan for epilepsy, onset of glaucoma, gastroenterology needs, chronic ear infections and tube placements. MJ is also diagnosed with combined hearing and vision loss also referred to as deafblindness. He receives therapies that include physical, occupational, speech, equine, music, vision and orientation and mobility and currently uses a wheelchair as primary means of transport along with a walker. He sees ten different specialties for his medical care. Despite MJ’s medical needs he continues to champion his education, social, and activities to include horseback riding, biking, apple picking, boating, and swimming. MJ enjoys life to the fullest. The Bentley’s have found that connecting with other families sharing similar stories has built their knowledge and created many lasting friendships. Nanci is passionate about helping families find their “voice” to advocate for their child and themselves. Nanci serves on boards and advisory councils to build community. Nanci was named 2023 Board member of the year for Ability Partners Foundation. Nanci and her family along with others built the first Universally designed in the United States Dream Big (dreambiginclusion.org). She’s the Family Engagement & Outreach Coordinator for Western & Finger Lakes Region of New York Deaf-Blind Collaborative (NYDBC)

Makenzie Cabrera

Makenzie is a wife and also mother of two special needs / medically complex boys - Jayse and Josiah. They have many different diagnoses. Jayse has autism, a heart murmur, a blood coagulation defect disorder, and chronic asthma. Josiah is one in a million facing a diagnosis of Familial Cold Autoinflammatory Syndrome which, as of this writing, 300 people are diagnosed with in the whole world! This condition makes him have a laundry list of other diagnoses (autism, hypotonia, Raynaud’s syndrome, hind foot valgus deformity, hearing/vision problems, arthritis, and the list continues!) My husband and I are natives to Orange County, NY but moved up here to be closer to stability and so I can pursue my BSN-RN degree. Combined the boys see over 10 different specialty doctors from Syracuse, Rochester, Boston, Albany, New York City, Philadelphia and California!

During my downtime I am a part of many different groups: I am an ambassador for Children’s Miracle Network of NNY, FMF & AID out of Switzerland, Young Adult Rare Representatives, and many other groups. I am also a medical advisory board member for YP AREA (Young Patients Autoimmune Research and Empowerment Alliance). My overall goal is to raise awareness and support other families who are battling the same life as us but to also raise awareness of the importance of genetic testing at birth or during prenatal stages.

Kristina Henry

Kristina is a mom of four girls - Elizabeth, Alison, Josephine, and Marilyn. They have multiple conditions including Down Syndrome, Autism, Ehlers Danlos Syndrome, Epilepsy, Type 1 Diabetes, ADHD, Narcolepsy with Cataplexy, Congenital Heart Defects, PANDAS/PANS and the list continues. Kristina’s family lived in New Hampshire for a while and received care at Boston Children's Hospital and Massachusetts General Hospital. This native of Rochester moved her family home and now they access care at UR Medicine Golisano Children’s Hospital as well as continuing to see specialists at Mass General. The care teams they see are primarily cardiology, endocrinology, neurology, developmental pediatrics, sleep medicine as well as various other departments. Kristina has held many positions in education including school administrator and special education teacher. During her time in the Rochester City School District and Canandaigua City School District she witnessed families having difficulty in trying to access adequate care. She joined this council as a way to be able to be a parent on the outside walking the walk of other parents, and being able to share not only her experiences, but also those of other families she interacts with.

Brandon & Kelley Switzer

The Switzer’s daughter Melina first came to UR Medicine Golisano Children's Hospital at age three when she had begun struggling with abdominal pain and stopped eating. She was diagnosed with colonic neuropathy and struggled over the next many years to eat enough to have the strength to carry out normal, everyday activities. She has had a temporary ileostomy as well as gastrostomy tube placed and received nutrition through a central line.  During her journey over the past years, we have been blessed with countless nurses, doctors, and child life specialists. Melina would not have gotten this far without her team of doctors. They will forever have grateful hearts for the 7-South floor, the GI, hematology, infectious disease, and many other amazing departments at this hospital.

Barb Vanherreweghe

Barb has been involved with UR Medicine Golisano Children’s Hospital for more than two decades. She is a mom of two. Her daughter Stacy was the 2nd oldest living child with Trisomy 18 living in the United States and survived to almost 37 years old. Barb has made it her career to fight for the rights of medically fragile children and their families to live safely at home with their families. She has been President of the Support Organization for Trisomy (SOFT) and related disorders for over 25 years helping to assure that the incompatible with life diagnosis is no longer used by physicians in the U.S. and all over the world. She has been a member of the Parent Advisory Council for Golisano Children’s Hospital for more than 20 years and is also a member of the advisory board for URMC’s Complex Care Center. Professionally she has worked in many roles at the Rochester office of SKIP of New York for 33 years, currently serving as Director. SKIP of New York acts as a free medical concierge, connecting children to the services and equipment they need to get well and live at home rather than at hospitals or institutions.

Tricia White

Tricia is a mom of two. In 2004, her water broke at 23 1/2 weeks and she was admitted to Strong Memorial Hospital where she would stay until her daughter Jamie was born at 25 1/2 weeks (considered barely viable at the time). Jamie was 1 pound 7 ounces at birth and spent 87 days in the NICU at Golisano Children's Hospital. Jamie came home two weeks before her due date to join big brother Nikolas. At discharge Jamie was just 3 pounds 10 ounces but doing everything she was supposed to.

Tricia says there is nothing like having support from a person who has been on a NICU journey. This has shaped the many ways she gives back to our hospital. She has been on the Family Advisory Council since 2006. She says her proudest achievement is starting and developing the mentor program in our NICU in 2010. That involves Tricia and other former NICU parents reaching out to families currently in the NICU, sitting by the bedside, providing emotional support and sharing in their struggles. Tricia also organizes and trains parents in the NICU Family Support program that hosts Family Nights each month in the NICU. Tricia also helped develop the virtual NICU Buddy Program that was started in 2021. For her efforts Tricia was awarded the 2014 Miracle Maker Award for Outstanding Commitment by a Grateful Parent and the 2016 Louise Criticos Volunteer Recognition Award from Friends of Strong. Thanks to donor funding, a part time NICU Family Advisor position was created in 2023 and after an interview process Tricia was hired into that position where she furthers the programs mentioned above.