Your Heart and Your Future: Healthy Hearts and Minds

Leonard & Madlyn Abramson Pediatric Research Center
3615 Civic Center Blvd., Joseph J. Stokes, Jr. Auditorium, Philadelphia, PA 19104-4399  

Date:
Apr 25, 2020 from 8:30 a.m. - 4 p.m. (ET)

A Conference for Adolescents and Young Adults

Children born with congenital heart disease are surviving and thriving in greater numbers than ever before but the path to adulthood is not always easy. To succeed as an adult with congenital heart disease you must be prepared to meet the demands of adulthood and the challenges of living with congenital heart disease. This conference is focused on teaching adolescents and young adults about their heart disease and some of the challenges of being an adult with congenital heart disease. We will explore the future of congenital heart disease, including new therapeutic options and ongoing research, as well as discuss practical life skills and coping strategies to help address the challenges of life with congenital heart disease.

The conference will be held in the Joseph J. Stokes, Jr. Auditorium in the Main Hospital. The registration fee is $20 and includes continental breakfast, breaks, lunch, parking and syllabus material.

Course objectives

  • Understand the basics of congenital heart disease
  • Discuss the challenges of being an adult with congenital heart disease
  • Discuss practical life skills and coping strategies for the challenges of living with congenital heart disease
  • Discuss the future of treatment, imaging and intervention for congenital heart disease

Cancellation and refund policy

Children’s Hospital of Philadelphia reserves the right to cancel or postpone any course due to any unforeseen circumstances. In the event of cancellation or postponement, Children’s Hospital of Philadelphia will refund any registration fees, less a $10 service charge, but is not responsible for any related costs, charges or expenses to participants, including cancellation charges assessed by airlines or travel agencies. In order to process refunds for course withdrawals, cancellation must be received in writing by April 18, 2020. No refunds will be issued thereafter.

Services for people with disabilities

If special arrangements are required for an individual with a disability to attend this meeting, please contact the Continuing Medical Education Department at 215-590-5263.

Program

  • 8:30 a.m. - Registration and Continental Breakfast
  • 9 a.m. - Welcome and Introduction; Emily Ruckdeschel, MD

The basics

  • 9:10 a.m. - Congenital Heart Disease: Why We Call It a Disease; Yuli Kim, MD
  • 9:30 a.m. - Transition: Taking Control of Your Healthcare; Dava Szalda, MD
  • 9:50 a.m. - Adulting 101: A Personal Perspective on Transition; Katherine Wu, MPH

Healthy body

  • 10:10 a.m. - Interventional Cardiology: Working Hard to Put Surgeons Out of Business; Matt Gillespie, MD
  • 10:30 a.m. - Imaging: Capturing Your Heart in the Best Light; Reena Ghosh, MD
  • 10:50 a.m. - Technology: There’s an App for That (How Technology is Changing the Way We Treat Congenital Heart Disease); Lauren Andrade, MD
  • 11:10 a.m. - Break

Healthy mind

  • 11:30 a.m. - Congenital Heart Disease and the Mind: What We Know; Julia Lamotte, PhD
  • 11:50 a.m. - Mindfulness: Being Present in the Medical World; Shoba Natarajan, MD
  • 12:10 p.m. - Integrative Medicine: Mind, Body and Mental Health; Kathryn Kopnitsky, Integrative Therapist
  • 12:30 p.m. - Lunch
    • Write down questions for patient and provider panels.
    • 3D heart models, prosthetic valves, electrophysiology devices available to review with providers.

Patient and Provider Panels

  • A group of adult congenital cardiologists and a group of adult patients with congenital heart disease will answer questions submitted during the lunch hour.
  • Children’s time with providers will be a mix of questions, games and prizes.
  • 1:30 p.m. - Patient and Provider Panels: Parents and Children Will Separate and Attend Different Panels
  • 2 p.m. - Patient and Provider Panels: Parents and Children Will Switch
  • 2:30 p.m. - Break: Ice Cream Social

Breakout sessions

  • 3:15 p.m.
    • Family Planning: Contraception, Pregnancy and Your Heart; Lynda Tobin, CRNP
    • Life After CHOP: How to Prepare for Doing it on Your Own (Social Work
    • Perspective); Kealy Johnson, MSW
    • Exercise and Activity: Restrictions or Prescriptions? Danielle Burstein, MD
  • 4 p.m. Adjourn

Unless otherwise noted, faculty is from Children’s Hospital of Philadelphia and/or the Perelman School of Medicine at the University of Pennsylvania.

Course director

  • Emily Ruckdeschel, MD - Attending Adult Congenital Cardiologist, Philadelphia Adult Congenital Heart Center

Course faculty

  • Lauren Andrade, MD - Adult Congenital Cardiology Fellow
  • Danielle Burstein, MD - Attending Pediatric Cardiologist
  • Reena Ghosh, MD - Advanced Cardiac Imaging Fellow
  • Matt Gillespie, MD - Professor, Pediatrics
  • Kealey Johnson, MSW - Social Worker, Cardiac Center
  • Yuli Kim, MD - Medical Director, Philadelphia Adult Congenital Heart Center
  • Kathryn Kopnitsky - Integrative Therapist
  • Julia Lamotte, PhD - Cardiac Psychology Fellow
  • Shoba Natarajan, MD - Director of Quality Improvement
  • Dava Szalda, MD, MSHP - Co-director, Transition to Adult Care Consult Service
  • Lynda Tobin, CRNP - Nurse Practitioner, Philadelphia Adult Congenital Heart Center
  • Katie Wu, MPH - Clinical Research Coordinator, Policylab

Testimonials

"I last minute decided to go to the CHD event, and it was one of the best decisions I’ve ever made! Being able to talk to and meet people who understand life with a CHD was so amazing since I hadn’t met many other people with CHDs! We were able to build such a unique community of people/friends to reach out to."

"The CHOP event was really great for allowing me to meet other young adults who overcame the same difficulties and hurdles I did growing up. I could not be more grateful for this opportunity to share my story with others who not only understood how I felt, but wholeheartedly empathized with what I went through."

"I really had a great time at the CHD event. I was able to meet others with similar experiences, and hear from physicians about past and future treatments for CHD. Our group remains in touch and I couldn’t be more grateful to have this amazing support system to lean on."

"This was the first time I met other college students living and thriving with CHD. I was amazed at how quickly we were able to relate to each other’s stories and experiences at CHOP. We try to meet up a few times a year, and I wouldn’t have been able to meet this amazing group of people without attending this event."

Contact information

If you have any questions or for additional information, please contact Emily Ruckdeschel at ruckdesche@email.chop.edu.

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