• By Terri Malloy

Mayo Clinic Hypoplastic Left Heart Syndrome Program to host family event

October 9, 2019
colorful cutout hearts hung up at an HLHS event

WHAT

"Feel the Beat," will bring together families, advocates, researchers and clinicians to learn about and raise awareness of hypoplastic left heart syndrome (HLHS), a rare and complex form of congenital heart disease. In this disease, the left side of a child's heart is severely underdeveloped.

The event, now in its seventh year, connects those in the HLHS community to share experiences while discovering the regenerative therapies being pioneered for congenital heart disease. Families and children from across the U.S. will hear from patients, physicians and researchers, and will participate in hands-on activities, including a research science fair.

This year's event will highlight the importance of research participants and clinical research coordinators, as well as the role of the nationwide Hypoplastic Left Heart Syndrome Consortium in conducting groundbreaking clinical research. Special activities include a panel discussion with coordinators and families from three HLHS Consortium sites that have participated in consortium research. The day also will include a special performance by Naomi Babcock, a 17-year-old ballerina in training who has hypoplastic left heart syndrome. She and her mother will join a panel conversation during the event to discuss the patient and parent experience.

WHO

Interviews are available Saturday, Oct. 12, from 11:45 a.m. to 1 p.m., with:

  • Timothy J. Nelson, M.D., Ph.D., director of the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome
  • Naomi Babcock, a 17-year-old ballerina-in-training who has HLHS
  • Staci and Kyle Strand, parents of a 2-year-old son with HLHS who participated in the phase I stem cell delivery clinical trial at OU Medicine
  • Rob and Katie Pieper, parents of a 2-year-old son with HLHS who participated in the phase I trial at the Children's Hospital of Philadelphia
  • Jennifer Gutman, mother of a 4-year-old with HLHS who participated in the phase I trial at Mayo Clinic

In addition, clinical research coordinators from OU Medicine, Children's Hospital of Philadelphia and Mayo Clinic — all members of the Hypoplastic Left Heart Syndrome Consortium — can discuss their work on the study and with these families.

WHERE

Mayo Clinic, Gonda Building, Geffen Auditorium and subway level, Rochester, Minnesota

WHEN

Oct. 12, 8 a.m.–2 p.m. For more information, view the event description on the Mayo Clinic Connect blog.

RSVP

RSVP to Terri Malloy, Mayo Clinic Public Affairs, at 507-284-5005 or newsbureau@mayo.edu.

###

About the Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome
The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. The specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. To learn more, email the program.

About Mayo Clinic
Mayo Clinic is a nonprofit organization committed to innovation in clinical practice, education and research, and providing compassion, expertise and answers to everyone who needs healing. Visit the Mayo Clinic News Network for additional Mayo Clinic news and An Inside Look at Mayo Clinic for more information about Mayo.

Please login or register to post a reply.