In today’s episode, Greg Ruf (he/him) talks about his diagnosis of dilated cardiomyopathy, genetic testing, heart failure, and patient advocacy. He explains the formation of the Dilated Cardiomyopathy Foundation, emphasizing the need for awareness, education, and support for patients. The discussion also highlights the genetic factors associated with the disease, the challenges in diagnosis, and the critical importance of genetic testing to identify at-risk individuals. Greg also addresses the barriers to awareness and testing in the medical community, a...
In today’s episode, Greg Ruf (he/him) talks about his diagnosis of dilated cardiomyopathy, genetic testing, heart failure, and patient advocacy. He explains the formation of the Dilated Cardiomyopathy Foundation, emphasizing the need for awareness, education, and support for patients. The discussion also highlights the genetic factors associated with the disease, the challenges in diagnosis, and the critical importance of genetic testing to identify at-risk individuals. Greg also addresses the barriers to awareness and testing in the medical community, advocating for better recognition and understanding of genetic cardiomyopathy. He highlights the necessity for patients to be proactive about their health and to seek genetic testing, especially if there is a family history of heart disease.
Key Points:
- Dilated cardiomyopathy is an enlargement and weakening of heart muscle
- Genetic factors play a significant role in cardiomyopathy
- Patients can be mis-diagnosed or undiagnosed
- Symptoms of DCM include fatigue and arrhythmias
- Awareness of genetic cardiomyopathy is lacking in the medical community
In 2017, Greg founded the DCM Foundation dedicated to helping patients and families that have dilated cardiomyopathy (DCM), following his own diagnosis with the disease and discovery that he carried genetic mutations linked to DCM. As a result of the disease, Greg experienced heart failure and had a heart transplant in 2021. He has served as the organization’s executive director and board president since the organization’s establishment. He also created the Genetic Cardiomyopathy Awareness Consortium (GCAC) in 2023 which includes eight patient groups (WomenHeart, Mended Hearts, DCM Foundation, HCMA, SADS, Children’s Cardiomyopathy, LMNA Cardiac, Team Titin and Danon Foundation) to raise the awareness that genetics plays in cardiomyopathy and get more patients and family members genetically tested. Greg has leveraged more than 30 years of experience as a successful entrepreneur to build the DCM Foundation. In addition to directing the organization, he also advises entrepreneurs of small businesses and serves as a subject matter expert on global recruiting trends for major business publications, having authored several white papers in this area.
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Here are more resources related to today’s topic, dilated cardiomyopathy.
- DCM Foundation
- Implications of Genetic Testing in Dilated Cardiomyopathy
- Find a Cardiomyopathy Specialist
- Genetic Cardiomyopathy Awareness Consortium
- Global Heart Hub for non-US residents
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Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.
The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ.
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