ABOUT US
MISSION STATEMENT
SPARCCC is a committed community-academic partnership with the goal of focusing the attention of researchers, clinicians, the pediatric oncology community and the general public on the experiences and needs of siblings of children with cancer.
SPARCCC members are constantly working to directly and indirectly facilitate sibling-focused research, provide education to professionals and the general public through dissemination of research findings, and support advocacy and the provision of screening and adequate care for siblings and families of children with cancer.
Who We Are
Dr. Alderfer is a Principal Research Scientist at the Center for Healthcare Delivery Science of the Nemours Children’s Health System and Associate Professor of Pediatrics at Sidney Kimmel Medical College of Thomas Jefferson University. She is Licensed Clinical Psychologist with nearly 20 years of experience in pediatric oncology focused upon understanding and improving family adjustment to cancer. She has secured funding from the National Cancer Institute (NCI), American Cancer Society (ACS), LIVESTRONG, Alex’s Lemonade Stand Foundation, and the Andrew McDonough B+ Foundation for her research. She is experienced in qualitative, quantitative and mixed methods, cross-sectional and longitudinal research, and intervention development and evaluation including randomized controlled trials. She has over 100 peer-reviewed publications and chapters and has won awards for her work including the 2007 Donald K. Routh Early Career Award from the Society of Pediatric Psychology and a meritorious research award at the 2010 Biennial Cancer Survivorship Research Conference.
Sandra K. Ring (Sandi) has been devoted to making a difference in the lives of children and families for over 25 years. Currently, Sandi works for the American Academy of Dermatology as Senior Manager and primary liaison for bi-directional communication and engagement with state societies across the nation. Her passion and dedication to impacting the lives of children and families is evidenced by the endless energy she devotes to participating with programs within the world of pediatric medical and psychosocial support. Sandi was previously at the American Academy of Pediatrics, Division of Children with Special Needs, where she worked to ensure comprehensive integration of Early Hearing Detection and Intervention practices and services nationwide. Prior to that role, Sandi was the Senior Manager of Medical Eligibility and Outreach at Make-A-Wish America where she was devoted to ensuring that eligibility criteria were clearly understood and consistently applied, and that comprehensive and customizable outreach marketing strategies were in place so that the 62 chapters nationwide were poised to reach every child potentially eligible for a wish. Sandi still works as a wish granting volunteer. Also, Sandi was on the inaugural Board of Directors for SuperSibs, and took on the role as National Director of Outreach and Education at prior to its shift to ALSF. Sandi had primary involvement in the development of the direct Comfort and Care mailings, the grief support materials, and the Support, Training, Awareness and Recognition (STAR) tools and resources provided to hospitals and organizations throughout North America. Sandi is a graduate of the Erikson Institute/ Loyola University (M.S. in Early Childhood Development), and is a Certified Child Life Specialist.
Dr. Lown is Assistant Adjunct Professor of Nursing, Department of Social and Behavioral Sciences, School of Nursing, University of California, San Francisco. Dr. Lown is an epidemiologist with expertise in behavioral health and psycho-oncology and researches the effects of childhood cancer on long-term psychological adjustment and health behaviors. She has published using data from the Childhood Cancer Survivor Study-CCSS to describe alcohol use patterns in adult survivors of childhood cancer and their siblings, tobacco use in siblings, and clustered health behaviors in survivors and siblings. Like Dr. Alderfer, she was recently involved in the development of the Standards for Psychosocial Care for Children with Cancer and Their Families. She has received funding from NCI, National Institute of Alcohol Abuse and Alcoholism and St. Baldrick’s Foundation. Dr. Lown is also a Patient Advocate in Children’s Oncology Group (COG) representing families of children diagnosed with cancer. Her daughters (both survivor and sibling) are healthy and thriving.
Kristi is the Assistant Camp Director at Okizu, a camp for children with cancer and their families. Kristi has worked with Okizu since 2007. During this time, she has served on the board of COCA-I (Children’s Oncology Camp Association) working with oncology camps throughout the United States and Canada. Kristi studied Public Health with a focus on Maternal and Child Health at Boston University. While in Boston, Kristi worked at Boston Medical Center working as Health Promotion Advocate in the Pediatric Emergency Department working to address social determinants of health & Dana-Farber Cancer Institute in Access Management.
Christina Sharkey is a doctoral student in Clinical Psychology at Oklahoma State University. She is specializing in the Pediatric Psychology track, under the primary mentorship of Dr. Larry L. Mullins. Christina is currently a Trainee Member of the Sibling Partnership for Advocacy, Research, & Care in Childhood Cancer, and has focused on sibling report of family functioning and psychosocial distress. Christina has received research funding from Alex’s Lemonade Stand Foundation and the Society of Pediatric Psychology. Her research interests include risk and resiliency factors for family adjustment to pediatric conditions, including cancer, disorders/differences of sex development, and inflammatory bowel disease. Christina has also examined neurocognitive functioning among cancer survivors, and healthcare management behaviors among adolescents/young adults with chronic medical conditions.
Christina Amaro is a doctoral candidate in the Clinical Child Psychology Program at the University of Kansas under the mentorship of Michael Roberts, PhD, ABPP, and is completing her internship at Nemours/A. I. duPont Hospital for Children. Christina’s research interests are within pediatric psychology and clinical child psychology. Specifically, she is interested in family functioning and family adjustment to chronic illness; program evaluation; and professional issues in psychology, including mentoring and training. Her dissertation is a meta-analysis examining interventions for siblings of youth with a chronic illness. Christina currently serves as a trainee member of the Sibling Partnership for Advocacy, Research & Care in Childhood Cancer (SPARCCC).
Dr. Long received her PhD in Clinical and Biological-Health Psychology from the University of Pittsburgh in 2012. She completed her clinical internship and postdoctoral fellowship in pediatric psychology at the Alpert Medical School of Brown University and Rhode Island Hospital. She joined the BU faculty in 2014. Dr. Long’s research focuses on (1) reciprocal influences between a child’s medical illness or disability and his/her family and cultural context, (2) health disparities in autism diagnosis and treatment, and (3) the development and evaluation of psychosocial interventions for children with chronic conditions and their families. The majority of her work has been carried out with families facing childhood cancer, intellectual disability, autism, and asthma.
Dr. Amylon is Emeritus Professor (active) in Pediatrics, Stem Cell Transplantation and Regenerative Medicine at Stanford University School of Medicine; Medical Director and Vice Chair of the Board of Directors of Okizu (which operates Camp Okizu, providing peer support, respite, mentoring and recreational programs for children with cancer and their families in northern California) and President-Elect of COCA-I. He has over 30 years of experience caring for children with cancer and their families, and extensive experience designing and conducting clinical trials through cooperative groups (Pediatric Oncology Group, COG). Dr. Amylon has a long-standing interest in the psychosocial and emotional aspects of pediatric cancer, and has collaborated on several research projects investigating the impact of the camp experience in this population. Dr. Amylon has over 80 peer reviewed publications, and has served on the Psychosocial and Behavioral Peer Review Committee for ACS.
Melanie is founder and former executive director of the nonprofit organization SuperSibs!, which has supported over 33,000 vulnerable brothers and sisters of children with cancer and their families across North America. Melanie received her B.A. in communication and public health from the University of Minnesota Duluth, and her M.A. in communication from the University of Minnesota. She currently serves as a Vice President for the Flint Group, a full-service integrated marketing, communications and public relations firm. She also held a full-time faculty position with University of Minnesota Duluth from 2011-2014. Melanie has served on Boards of Directors for Ronald McDonald House Charities, Be the Match, The Marrow Foundation, and currently serves on the Women's Health Center Board and Duluth Superior Area Community Foundation Board and SuperSibs powered by Alex’s Lemonade Stand Foundation Advisory Board.
Lisa Towry is the Director of Programs and Services at Alex’s Lemonade Stand Foundation (ALSF), a nonprofit organization dedicated to funding research looking for better treatments and cures for all childhood cancers. Lisa is one of the few members of the ALSF staff that has been with the Foundation essentially since inception. She met Liz and Jay Scott, Alex’s parents, in 2005 as the Foundation was expanding rapidly and was in need of someone to manage the school program and grant processes. With her previous experience in both finance and the school system, Lisa was a natural for the position. Since that time, Lisa’s role has progressed into a leadership position within the Foundation. She is responsible for the oversight of the Foundation’s Grant Program which is comprised of 13 types of competitively reviewed grants, as well as Family Support Services such as the Travel For Care, Hero and Sibling Support Programs, and the Childhood Cancer Database Project. For the last four years, Lisa has been an active member of the Coalition Against Childhood Cancer (CAC2) community group, serving on the elected board as the Secretary.
Grace is a Family Services Specialist at Alex’s Lemonade Stand Foundation (ALSF), a nonprofit organization dedicated to changing the lives of children with cancer. Since joining the foundation in 2017, she has worked with the SuperSibs program and other support services like Travel for Care and Parent to Parent programs. When families are referred to the foundation, she assesses what needs must be met and suggests resources within ALSF or externally. Her background in Social Work and experience in health care settings lends well to serving families facing a pediatric cancer diagnosis as well as communicating with health care professionals nationwide. Grace is a member of the Association of Pediatric Oncology Social Workers (APOSW).
Lauren Quast is a doctoral student in the Clinical Psychology Program at University of Georgia. Lauren’s current research focuses on a) quality of life for parents of children with chronic illnesses, b) medication adherence and transition readiness in adolescent and young adult transplant recipients, and c) the impact of summer camp on child independence and family functioning for children with chronic medical conditions. Prior to starting graduate school, Lauren worked as a Research Assistant at the Children’s Hospital of Philadelphia. Her research examined neurocognitive, family, and social functioning for pediatric brain tumor survivors. Lauren has volunteered with siblings and families of children with cancer in a variety of settings and hopes to further research the impact of childhood cancer on siblings and parents.