Watch the webinar here.

This webinar is designed for parent(s)/guardians of newly diagnosed children or teens with lupus or those needing more information. The webinar features an overview of lupus with Jon (Sandy) Burnham, MD, MSCE, of the Children's Hospital of Philadelphia and a panel discussion that includes Dr. Burnham, a psychologist and parents of children with lupus.

Topics include:

• Overview of lupus
• Treatments and side effects
• Working with your child to take medications consistently
• Understanding doctor’s visits
• How to help you and your child cope with the diagnosis

Thank you to the panelists!

Jon (Sandy) Burnham, MD, MSCE

Dr. Burnham is an Associate Professor of Pediatrics in the Division of Rheumatology at The Children’s Hospital of Philadelphia (CHOP) and the University of Pennsylvania School of Medicine. He currently is the Clinical Director and Director of Quality and Patient Safety in the Division of Rheumatology.  He is the Director of the CHOP Lupus Program and Co-Director of the Lupus Integrated Nephritis Clinic.

Dr. Burnham is actively involved in quality improvement initiatives at CHOP and nationally, and studies care delivery in children with juvenile idiopathic arthritis and lupus.  He has worked collaboratively to develop clinical pathways to diagnose, treat Kawasaki disease and MIS-C, and prevent acute adrenal insufficiency in children treated with chronic steroids. His work to operationalize “treat to target” in juvenile idiopathic arthritis served as the model for implementation in the Pediatric Rheumatology Care & Outcomes Improvement Network (PR-COIN) at sites across the US and Canada. He is now working to develop and implement the pediatric lupus care index, a composite tool to measure the quality of care with a focus on outcome measurement and comorbidity assessment and prevention.

He is the CHOP site PI of PR-COIN and serves as the co-chair of the PR-COIN Outcomes Committee.  In addition to internal funding, he has received funding from the National Institutes of Health and the Rheumatology Research Foundation and is the recipient of the 2018 CHOP Master Clinician Award.

Christina M. Rouse, PsyD

Dr. Rouse is a pediatric psychologist in the Division of Urology and Pediatric Health and Behavior Program at Children’s Hospital of Philadelphia. Dr. Rouse completed her fellowship in General Pediatric Psychology at Nationwide Children’s Hospital and her internship in Child and Adolescent Psychology at the University of Rochester Medical Center. Dr. Rouse is the psychologist at CHOP's Lupus Integrated Nephritis Clinic.

Angela Chapson

Angela is a parent from the Philadelphia area. Her daughter was diagnosed with Lupus Nephritis at the age of 8 and will turn 17 in October. After enduring an aggressive treatment plan upfront, Angela and her family are fortunate that her daughter has been in good health ever since.

Rodney Ross

Rodney's son Parker was diagnosed with Lupus in 2007 at age 14. Parker is 27 now. As a parent, Rodney can attest that it is heartbreaking at times to see his son struggle with this disease. On the other hand, Rodney says, Parker refuses to be defined by Lupus and Rodney's job as a parent is to support his son in anyway possible.

Linda Vazquez

Linda's daughter Alexa was diagnosed with SLE at age 13 and is now 24. Her struggle with the disease has been long and difficult, including a kidney transplant, a virus called CMV, and Alexa was even told she may never walk again. Alexa's kidney lasted over 5 years and there were many hospitalizations and challenges in that time period. However, Alexa has been on dialysis for 2 months and is awaiting evaluation for a new kidney.

Watch the webinar here.

This webinar is designed for parent(s)/guardians of children or teens diagnosed with lupus or those needing more information. The webinar features an in-depth look at lupus after the shock of the initial diagnosis with Kelly Rouster-Stevens, Md, PharmD pediatric rheumatologist from Children’s Healthcare of Atlanta and a panel discussion that includes Dr. Rouster-Stevens, Andrea Knight MD, MSCE at Children’s Hospital of Philadelphia, and parents of children with lupus.

Topics include:

• Recognizing and preventing a flare
• Infection Prevention
• What does this new normal look like
• Importance of medications

Thank you to the panelists!

Kelly Rouster-Stevens, MD, Pharm D

Dr. Kelly Rouster-Stevens, MD, PharmD is a Pediatric Rheumatology Specialist at Children’s Healthcare of Atlanta and has over 20 years of experience in the medical field.  She graduated from University of Cincinnati College of Medicine Medical School in 2000. Dr. Rouster-Stevens is the Pediatric Rheumatology Fellowship Program Director, Pediatric Rheumatology, Emory University and Associate Professor of Pediatrics, Emory University. Dr. Stevens is also a member of the Lupus Foundation of America, Georgia Chapter Medical Advisory Board.

Andrea Knight, MD, MSCE 

Andrea Knight, MD, MSCE is an affiliate member at the Center for Pediatric Clinical Effectiveness (CPCE) and PolicyLab at The Children’s Hospital of Philadelphia (CHOP), an Assistant Professor of Pediatrics at the University of Toronto and an Associate Scientist at the Hospital for Sick Children Research Institute. Dr. Knight obtained her undergraduate degree from the University of Toronto and medical degree from the College of Physicians and Surgeons of Columbia University in New York City. She completed residency in pediatrics and fellowship in pediatric rheumatology at CHOP, and earned her Master of Science in Clinical Epidemiology (MSCE) from the University of Pennsylvania.

Dr. Knight's research focuses on improving mental health for children and adolescents with systemic lupus erythematosus (SLE) by investigating ways to enhance identification and treatment of youth with SLE affected by depression and anxiety. She is also interested more broadly in psychosocial and patient-oriented outcomes, healthcare disparities and utilization in youth with SLE and other chronic rheumatic disease. Dr. Knight has led studies investigating depression and anxiety in youth with SLE, as well as a project examining the national inpatient healthcare burden on pediatric SLE patients. She currently holds membership in the American Medical Association, the American Academy of Pediatrics, and the Childhood Arthritis and Rheumatology Research Alliance, among other organizations.

Shannon Oscar

Shannon is the mother of a 14-year old daughter with lupus nephritis. Abbie was diagnosed with SLE at the age of 11, so the family has been dealing with the impacts of the disease for three years, giving them some early experience with the challenges of management. She is happy to share their experiences and offer any answers she can to families grappling with questions involving their children with lupus.

Aisha Amin

Aisha Amin is a loving compassionate yet assertive human being. Her greatest accomplishments are being a mother, grandmother, friend, and trusted confidant. Her daughter was diagnosed with SLE Lupus at age 14 and shortly after that she went into service at Children’s Hospital of Philadelphia (CHOP) on the Parents Advisory Board. While on this journey with her daughter, she has learned the value and importance of a medical team whose core values and beliefs are patient AND family centered care. As a parent she empowered her child to ask questions, make informed decisions and to remember she is not alone. There is a higher power that is guiding her, and that power is not her mom. Aisha is a lifelong learner as well.

Jennifer Mearkle

Jennifer Mearkle is mother to 13-year-old Lizzie who was diagnosed with SLE Lupus almost 2 years ago. Jennifer is Co-facilitator of the Lupus Parent Project, a group providing peer-to-peer support for parents of adolescents and young adults living with lupus.

Watch the webinar here.

This webinar focuses on successfully transitioning from pediatric to adult health care and preparing for the changes ahead, including college, career, dating, family planning, or whatever the future holds. The suggested audience is adolescents with lupus aged 16 and older and parents or guardians of adolescents with lupus.

The webinar features an overview from Joyce Chang, MD, MSCE, a Rheumatologist in the Division of Rheumatology and the Lupus Integrated Nephritis Clinic at Children's Hospital of Philadelphia followed by a panel discussion with Dr. Chang, a mental health expert, a parent, and young adults with lupus.

Thank you to the panelists!

Joyce Chang, MD, MSCE

Dr. Chang is an attending rheumatologist in the Division of Rheumatology and the Lupus integrated Nephritis Clinic at the Children’s Hospital of Philadelphia (CHOP), as well as an Assistant Professor of Pediatrics at the University of Pennsylvania Perelman School of Medicine. Her clinical interest is in helping youth with lupus and other connective tissue diseases take charge of their disease and successfully navigate the health care system into adulthood. She directs the research efforts within the CHOP Lupus Program and has funding from the National Institutes of Health and the Lupus Research Alliance to develop strategies to prevent long-term problems from childhood-onset lupus, such as heart disease.

One of Dr. Chang’s main focuses is improving the health care transition from pediatric to adult care for youth with rheumatic diseases. She is the transition champion for quality improvement efforts within CHOP and has worked on developing tools to measure how well the care team is doing with processes to help youth prepare for adulthood. She also co-leads the Transition Learning Collaborative (TLC), which is a multi-site effort supported by the Childhood Arthritis and Rheumatology Research Alliance. The TLC aims to understand how to implement health care transition processes within pediatric rheumatology centers across the US.

Christina M. Rouse, PsyD

Dr. Rouse is a pediatric psychologist in the Division of Urology and Pediatric Health and Behavior Program at Children’s Hospital of Philadelphia. Dr. Rouse completed her fellowship in General Pediatric Psychology at Nationwide Children’s Hospital and her internship in Child and Adolescent Psychology at the University of Rochester Medical Center. Dr. Rouse is the psychologist at CHOP's Lupus Integrated Nephritis Clinic.

Elexis Hubbard

Elexis is 22 years old and was diagnosed at the age of 17 with SLE and a few years prior to that was diagnosed with Alopecia Areata. She currently works full time and goes to school full time studying Clinical Social Work. She has fully transitioned to an adult rheumatologist last year

Alia ElQunni

Alia is 27 years old and was diagnosed with SLE and Lupus Nephritis at 17 years old. She is currently a full-time college student and also has a full time job as a Leading Clinical Research Coordinator for Dr. Alfred Kim at the WashU Lupus Clinic and Division and Rheumatology. She transitioned to an adult rheumatologist at the age 21.

Marti Thomas

Marti is the mom of three “grown-ish” children, a retired high school English teacher and lives with her husband in the St. Louis, MO. Their youngest daughter, SaraRachel, was diagnosed with Lupus at age 13, graduated early from high school, then went to University of Missouri. This began her transition from pediatric to adult medical treatment and support. SaraRachel is now 23 and the transition has evolved but is still ongoing. Marti now serves on the Lupus Foundation Board of Directors, consults with PhD candidates in Education and tends to her 3 Yorkshire Terriers.

Watch the webinar here.

The final webinar in this series focuses on the non-medical parts of treating lupus, including a look at the social determinants of health, complementary medicine, nutrition, exercise, and other ways to stay healthy while living with lupus. Presented by Austin Dalrymple, DO, a pediatric rheumatologist, this presentation is followed by a panel discussion. The suggested audience is adolescents with lupus and their parents or guardians.

Thank you to the panelists!

Austin Dalrymple, DO

Dr. Dalrymple is a pediatric rheumatologist at SSM Health Cardinal Glennon Children’s Hospital and an Assistant Professor of Pediatrics at Saint Louis University School of Medicine. He completed his undergraduate studies at Pittsburg State University and medical school at Kansas City University of Medicine and Biosciences College of Osteopathic Medicine. His work focuses on patient care as well as education of medical students, pediatrics residents, and rheumatology fellows. His research interests include the evaluation of biomarkers in JIA and exploring the barriers to patients and families arriving at medical visits.

Maria R. Mascarenhas, MBBS

Dr. Mascarenhas is a Pediatric Gastroenterologist in the Division of Gastroenterology, Hepatology and Nutrition at Children’s Hospital of Philadelphia. She serves as the Section Chief of Nutrition in the Division of Gastroenterology and Nutrition, Medical Director of the Clinical Nutrition Department and Director of the Integrative Health Program. Dr Mascarenhas received her medical degree from St John’s Medical College in India, pediatric training at Downstate Medical Center in Brooklyn and Texas Children’s Hospital in Houston, pediatric gastroenterology and nutrition fellowship training at the Children’s Hospital of Philadelphia and integrative medicine training at the University of Arizona. She is a Professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania. To complement her extensive training and clinical skills she has additional training in pediatric massage, ayurvedic nutrition and clinical hypnosis. Her research interests include pediatric nutrition, nutrition support, integrative medicine, cystic fibrosis and 22q deletion syndrome. Dr Mascarenhas is deeply committed to education and training the next generation of pediatric gastroenterology and nutrition experts. Dr Mascarenhas is a sought after national and international speaker and is widely published including her latest publication: Anti-Inflammatory Family Cookbook which is getting rave reviews from pediatricians, registered dietitians and families.

Adraine Mayo

Adriane Mayo is a volunteer for the Lupus Foundation of America, Philadelphia Tri-State Chapter and lupus support group facilitator. She has lived with lupus for nearly 30 years, diagnosed at the age of 12 after years of symptoms. She holds an Associate of Arts degree in Social Science and is a married mother of two in Camp Hill.

Jennifer Sherker, PsyD

Dr. Sherker is a Pediatric Psychologist in the Department of Child and Adolescent Psychiatry and Behavioral Sciences (DCAPBS) and Psychosocial Program Manager for Pain and for the Center for Amplified Musculoskeletal Pain Syndromes, as well as for the Acquired Autonomic Dysfunction Program (AADP) at CHOP.  She has 15 years of experience treating chronic pain and has contributed to work on CHOP's Chair's Initiative on Lupus. Additionally, she is overseeing the process for use of biofeedback and clinical hypnosis within DCAPBS at CHOP. She is also heavily involved in Quality Improvement and Patient Safety work in behavioral health at CHOP.