PHA Live is a monthly series of Facebook Live events and webinars that provides an opportunity for those affected by pulmonary hypertension (PH) to hear from experts on health, wellness, science and research topics. Recordings of PHA Live events will become available on this page within three business days of the original program.
Caring for a Child with Pediatric PH
Thursday, June 22 at 2 p.m. EDT
Caring for a child with pulmonary hypertension (PH) can be challenging and requires careful planning and management. From school planning to adolescence or transitioning to adult care, there are many questions and decisions that need to be addressed.
To help you navigate this complex journey, the Pulmonary Hypertension Association (PHA) will host a webinar on Thursday, June 22 at 2 p.m. EDT. Our panel of experts, including pediatric PH specialists and parent advocates, will share their firsthand knowledge and experience in treating and caring for children with PH. During the discussion, the panel will provide an overview of pediatric PH and offer practical advice and tips to help you and your child prepare for school, physical activities, hospital visits, managing medications and other key daily living topics.
Register today to join the discussion.
About the Speakers
Rachel Sullivan, M.D.
Rachel Sullivan, M.D., is an assistant professor of pediatric cardiology and the associate director of the Pediatric Pulmonary Hypertension Program at Monroe Carell Jr. Children’s Hospital at Vanderbilt University. She received her training in pediatrics and pediatric cardiology at the Medical College of Wisconsin followed by an advanced fellowship in pediatric pulmonary hypertension at Stanford University. Dr. Sullivan cares for children with all forms of pediatric pulmonary vascular disease. Her interests focus on the treatment of pulmonary vascular disease associated with complex congenital heart disease.
Melissa Magness, M.S.N., APRN, CNP-AC
Melissa Magness, M.S.N., APRN, CNP-AC is an experienced nurse who has dedicated her entire career to serving patients at Cincinnati Children’s Hospital Medical Center. She holds an acute care pediatric nurse practitioner degree, which she received in 2012. Throughout most of her career, Melissa has worked in a critical care setting, joining the hospital’s PH team in 2015. Melissa is passionate about her patient population and helping them achieve their highest potential with treatment of their disease process. She is actively involved in improving the care of patients through PHA and the pediatric PH network. In addition, Melissa is a medical co-director of Camp Joyful Hearts, a residential weeklong camp for children with heart defects, PH and those who have received heart transplants.
Jayna Wall, parent of a child with PH
Jayna Wall is the mother of Jackson Wall, a child with PH who was diagnosed at 14 months old. Now 11 years old, Jayna has more than a decade of experience caring for a child living with PH. She also has extensive experience with subcutaneous Remodulin and can offer tips for parents whose needs to be on subcutaneous therapy. In addition to her involvement with PHA, Jayna and the Wall family host an annual fundraising golf tournament called “Driving Fore a Cure for PH.”
Jeff Harpp, parent of a child with PH
Jeff Harpp and his family began their PH journey in 2015 when Jeff’s son Cash, now 16, was diagnosed with idiopathic pulmonary hypertension (iPAH). Jeff and his family first attended PHA’s International Conference and Scientific Sessions in Orlando in 2018 and have continued to engage with PHA, advocating for improved access to PH medications and oxygen.
Watch Previous PHA Live Events
Pulling the Thread on Medicaid Unwinding
Jaeger Spratt walks through what pulmonary hypertension (PH) patients need to know about maintaining Medicaid coverage during these changes. Jaeger also reviews the specifics of Medicaid unwinding in different states and how to navigate the system to ensure you can maintain your coverage.
Respiratory Infections and Pulmonary Hypertension
Ivan Robbins, M.D., and Nidhy Varghese, M.D., discuss the impact viral respiratory infections have on adults and children with PH. They share information on the symptoms of viral infections, the impact of RSV on children and older adults with PH and give an overview of how to treat these conditions safely while on PH medication.
2022 Focus on Pulmonary Hypertension Research
Pulmonary hypertension experts Anna Hemnes, M.D., and Evan Brittain, M.D., M.Sc., moderate a panel discussion on the latest advances in pulmonary hypertension (PH) research. Panelists Thenappan Thenappan, M.D., and Corey Ventetuolo, M.D., share relevant data and research advances presented at the PHA 2022 International PH Conference and Scientific Sessions in Atlanta.
About CTEPH: A Patient’s Perspective
Angela Michelle, who was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) in 2018 , shares her story for CTEPH Awareness Day 2022. Angela recounts how she learned she had CTEPH and her experience since diagnosis. William Auger, M.D., explains CTEPH causes, symptoms, risks, diagnosis and treatment.
Navigating Open Enrollment – Ask the Experts
In this webinar, Laura Nowicki, RN, and PHA staff answer insurance questions. Questions from this webinar were collected and will be added to a follow-up FAQ document to ensure as many questions are answered as possible.
Navigating Open Enrollment – Medicare: Tips & Troubleshooting
In this webinar, Danielle Burkett, CMA, shares Medicare insights and her knowledge from working with insurance companies and specialty pharmacies for over seven years. Learn what experts wish their patients knew about Medicare and get tips on navigating common Medicare plan challenges.
Thanks to our supporters of PHA Connects, patient education programs.
PHA thanks Janssen Pharmaceuticals, Inc. for its Diamond sponsorship of the PHA Connects fund, which sponsors patient education programming.
PHA thanks United Therapeutics for its Silver sponsorship of the PHA Connects fund, which sponsors patient education programming.
PHA thanks Altavant for its Bronze sponsorship of the PHA Connects fund, which sponsors patient education programming.