Our annual Feel the Beat event is a family-friendly event for anyone and everyone interested in learning more about hypoplastic left heart syndrome (HLHS) and the work the Todd and Karen Wanek Family Program for HLHS is doing. It's also a great opportunity to connect with other heart-warrior families!
Feel the Beat was created in 2013 as team members from the HLHS program were looking for ways to bring HLHS families together, and to thank research participants for all that they’ve done for the program. None of the program’s research work would be possible without support and participation of families.
Now in its seventh year, Feel the Beat has grown and continues to bring together families, advocates, researchers, and physicians to transform the future of HLHS. The theme this year is "Elevate" -- raising awareness and celebrating how research enhances the lives of individuals with HLHS. We'll be highlighting the role of Clinical Research Coordinators on this year's panel. We have coordinators and families from several HLHS Consortium sites who will share their experiences and describe how impactful this positive relationship is to newly-diagnosed families.
We'll also have a very inspiring special guest, Naomi Babcock, who is a 17-year old, pre-professional ballerina with HLHS. Naomi and her mother will walk us through their journey from being diagnosed after birth, to becoming a student who is training full-time in New York. Naomi will also give a special performance and meet-and-greet to end the day!
Please join us on October 12, 2019 from 8:00 a.m. until 2:00 p.m. in Rochester, MN.
The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of delaying or preventing heart failure 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 or to participate in the research, email HLHS@mayo.edu and follow the HLHS program on Facebook, Twitter and Instagram.
Send an email to invite people you know to join the HLHS page.