Who We Are
Meet the team.
Sisters by Heart is a group of parents and patients who came together during their journeys with Hypoplastic Left Heart Syndrome, many of whom were fortunate to meet prior to their child’s birth. We’ve supported each other in our journeys with single ventricle for the past decade. Knowing the challenges and difficulties we faced at our own child’s diagnosis (and those first several months of life), we created Sisters by Heart to reach out and support parents of the newly diagnosed. A major aspect of our mission is sending care packages to parents at the beginning of their journey. We want them to know they are not alone and to provide resources and understanding while their child undergoes care and treatment from birth and beyond.
We at Sisters by Heart are all volunteers. We proudly dedicate our time and energy to Sisters by Heart because we feel strongly about its mission and positive vision for single ventricle patients and families.
Lacie joined Sisters by Heart in 2019 and has served as President since 2023. When her son, born with HLHS, developed feeding struggles, Lacie became actively engaged in awareness and advocacy within the pediatric cardiac community. She has been actively involved as a parent partner with the NPC-QIC since 2016. She has served as both a co-lead and executive sponsor of the dynamic group that created the Tube Weaning Toolkit and has been part of the NPC-QIC leadership team since 2018. Lacie has also been active in her local heart communities, serving on hospital patient and family advisory boards and focus groups. Lacie is passionate about empowering single ventricle families throughout their journey by relentlessly spreading a message of hope and by delivering support through education, collaboration and advocacy.
Kristen joined Sisters by Heart in 2020. She is a Bay Area, California mom to two boys, including her single ventricle warrior Bennett. After Bennett's prenatal diagnosis and birth in 2015, Kristen became passionate about advocating for CHD including the importance of support and connection for CHD families. She has been a member of the Single Ventricle Family Advisory Council at Lucile Packard Children's hospital since 2015, a participant in NPC-QIC, and enjoys mentoring new CHD families. Bennett's single ventricle journey has taught Kristen to celebrate both the big and small moments in life, choosing HOPE with each step of the way.
A founding member of Sisters by Heart, Amy brings a wealth of financial and nonprofit experience to her role in the organization. Amy holds both her CPA and her JD, and provides financial and accounting expertise to churches, schools and other nonprofit organizations. She is an active member of the heart community, both as a parent partner of the NPC-QIC and a founding member of the Los Angeles Heart Moms support group. Amy now lives in rural north San Diego county, where she splits her time between homeschooling both her heart kiddo and his heart healthy sibling (by choice - most days, at least!), providing accounting advice to her clients and enjoying country life, complete with 2 acres and lots of animals! Amy blogs regularly at www.hopeforbabybennett.com
Meg joined Sisters by Heart in 2021 as the Director of Fontan Patients, bringing her knowledge and expertise as a patient with HLHS to the organization. Meg is fiercely passionate about empowering patients to take control of their healthcare and live their best quality of life. This passion led her to co-found, Single Ventricle Patient Day: Teens and Adults hosted by the Fontan Outcomes Network. In addition, Meg also serves as the patient lead of the Building Community and Engagement workgroup for the Fontan Outcomes Network as well as a committee member of the Transition/Lifelong Care Committee for Conquering CHD.
Jennie joined Sisters by Heart in 2014 bringing her technological expertise to the organization. Jennie is a parent partner with NPC-QIC, the co-lead of NPC-QIC Neurodevelopmental Learning Lab, and has presented at multiple NPC-QIC Learning Sessions. She is active at Lucile Packard Children’s Hospital at Stanford as the Single Ventricle Heart Center Family Advisory Council lead, and on the Hospital Wide Family Advisory Council.
Erica joined Linked-by-Heart in 2015 as a regional co-coordinator in the SW region. She actively participates in NPC-QIC work and is a co-leader of Colorado Heart Families, a parent and provider group working together to support cardiac families and improve the inpatient experience at Children’s Hospital Colorado. Erica is passionate about connecting and supporting families and working together with parents and providers to improve the outcomes and outlook for children and families living with HLHS.
Amanda has Tricuspid Atresia, Atrial Septal Defect, Ventricular Septal Defect, Hypoplastic Right Heart Syndrome, and Cardiac Cirrhosis due to her Fontan. She is a Teen and Adult Coordinator for Conquering CHD - Ohio and a committee member of Health Disparities Committee for Conquering CHD. Amanda also helps provide peer to peer support for CHD patients to have safe space to talk
Christie joined Sisters by Heart 2018 after serving in Linked by Heart for 2 years. She is a Southern California mom of four amazing kids, including her HLHSer, Bennet, who was born in 2012. She jumped head first into advocating for the heart community when Bennet was diagnosed with HLHS 24 hours after he was born and faced many setbacks in his recovery. She continues to be an active mentor to newly diagnosed families in her community and in the greater Los Angeles area.
Raven Norris joined Sisters by Heart in 2021 and serves as the Director of Content Development. She is a San Francisco, California mom to two girls, including her HLHSer, Isabel, who was born in 2015. Raven has been passionate about the heart community and spreading CHD awareness since Isabel was diagnosed 48 hours after birth. As a former federal prosecutor and in-house litigator for a global company, advocacy is second nature for Raven. She uses these skills to raise much needed awareness for CHD and to help Single Ventricle and other CHD Families gain access to key information so that they can confidently advocate for their child through this complex medical journey. Raven has been a participant at the NPC-QIC conferences and recently served as the featured parent speaker for the 2019 inaugural Pediatric Congenital Heart Association fundraiser in San Francisco.
Allison joined Sisters by Heart in 2023. She is an Assistant Professor of Biomedical Informatics at Vanderbilt University Medical Center. She received her PhD in Biomedical Informatics in 2010, has published more than 70 peer-reviewed journal articles, delivered more than 100 scientific presentations, and has enabled more than $41 million in extramural funding through her collaborative research, with 3 grants that she led as Principal Investigator. She is a mom to 2 children, including her son Charlie, who was born with a single ventricle in 2016. She is involved with NPC-QIC as a Parent Member of the Scientific Review Committee and with FON as the Parent Representative for Monroe Carell Jr. Children’s Hospital at Vanderbilt. She also serves on the Monroe Carell Patient and Family Advisory Council.
Stacey co-founded Sisters by Heart in December 2010. Since giving birth to her daughter, diagnosed prenatally with HLHS, Stacey’s taken on several roles in the pediatric cardiac field working to improve care and outcomes for children living with single ventricle defects. Stacey serves on the Executive Leadership Team for the National Pediatric Cardiology Quality Improvement Collaborative (“NPC-QIC”) and Fontan Outcomes Network (FON), and the Family Leadership Committee of the American Board of Pediatrics. Stacey works as a paralegal in Phoenix, Arizona and is also a certified Reiki Master. She firmly believes parents play an equal role, as partners with clinicians, in their child’s healthcare – in both the physical and mental health care space. Stacey is dedicated to empowering families affected by single ventricle disease and works with clinicians across the country to bridge the gap between patient and provider.