All Access DNA

Should I consider genetic testing for dilated cardiomyopathy?

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.
Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com
Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.
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
Any inquiries on this podcast can be sent to AllAccessDNA@gmail.com
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. 

Are Leukemia and Lymphoma Hereditary?

In this conversation, Sarah Bannon discusses the complexities of inherited blood cancers, particularly leukemia, and the evolving role of genetic counseling in understanding and managing these conditions. She highlights the historical context of genetic research in blood cancers, the importance of family history in assessing risk, and the advancements in genetic testing that have led to better identification of hereditary cancer syndromes. The conversation also covers the implications of genetic testing results for patients and their families, the challenges faced in the field, and the rewarding aspects of working in this emerging area of genetic counseling.
On This Episode We Discuss:
What inherited blood cancers are and how they may run in families
There are many known genes linked to hereditary blood cancers
How genetic testing can help monitor family members for early signs of cancer.
The role of clinical trials to explore preventative treatments for those at risk.
Sarah is a genetic counselor with over 14 years of experience in cancer genetics, specifically leukemia and lymphoma. She is a widely sought expert on hereditary predispositions to hematologic malignancy, which has been the focus of her clinical care and research. Sarah works as a genetic counselor at the National Institute of Allergy and Infectious Diseases (NIAID).
Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Remember to rate and review to help others find us. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com
Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.
Here are more resources related to today’s topic, blood and bone marrow cancers:
National Marrow Donor Program and Be The Match
Leukemia and Lymphoma Society
Clinicaltrials.gov tracks all clinical trials available in the US
Team Telomere - A Community for Telomere Biology Disorders
RUNX1 Research Program
Findageneticcounselor.org to find a genetic counselor near you
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com
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. 

How Accessible is Genetic Testing?

Skip to 03:19 min for episode start if you want to bypass intro.
In this episode of All Access DNA, host Kate Wilson interviews Deanna Darnes about the intricacies of genetic counseling and testing. We discuss Deanna's journey into the field, the various reasons individuals seek genetic testing, the challenges faced in accessing these tests, and the complexities surrounding insurance coverage. The conversation also highlights the differences between direct-to-consumer testing and tests ordered through healthcare providers, emphasizing the importance of understanding the logistics and implications of genetic testing. In this conversation, Deanna Darnes discusses the complexities and limitations of genetic testing, emphasizing that not all tests are created equal and that they cannot provide a complete picture of an individual's genetic health. She highlights the importance of understanding test results, navigating the healthcare system, and advocating for oneself in seeking genetic information. The conversation also touches on the need for better education and awareness about genetic testing, both for patients and healthcare providers, to improve access and understanding of genetic health.
 
On This Episode We Discuss:
Access to genetic testing can be limited by awareness and physician recommendations.
Insurance coverage for genetic testing varies widely and can be complex.
Genetic testing methodologies can differ significantly between consumer and physician-ordered tests.
Genetic tests cannot provide a complete picture of health.
Healthcare providers need to be more informed about genetic testing.
Access to genetic testing is multifaceted and requires awareness and self-advocacy
 
Deanna R. Darnes, MS, LCGC, is a highly accomplished genetic counselor and clinical trial specialist, bringing over a decade of experience to roles that combine clinical excellence and a commitment to advancing genomic equity. She currently serves as a clinical trial specialist at the Scripps Research Translational Institute, where she coordinates polygenic risk score studies and provides genetic counseling, excelling in translating complex genetic research for study participants and collaborators.
Previously, as the Director of Genetic Counseling Services at the Fetal Care Center in Dallas, Deanna managed genetic testing for multiple clinics, implemented advanced screening practices, and founded a unique Clinical Observation Program for prospective genetic counselors. She also held roles at Obstetrix Medical Group, providing prenatal counseling and mentoring future genetic counselors.
 
A thought leader in her field, Deanna has moderated discussions on genetic counseling's evolution and spoken widely on genomic equity, presenting at national forums and webinars. Her research has been published in prestigious journals, addressing topics such as reproductive healthcare disparities and polygenic risk score utilization. As an advocate for diversity in genetics, she participates in key advisory boards and task forces, leveraging her expertise to foster inclusive genetic research and care.
 
Please subscribe to this podcast on Apple Podcasts, Spotify, or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com
 
Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.
 
Here are more resources related to today’s topic, access and genetic testing.
Findageneticcounselor.org to look for a genetic counselor in your area
Episode 5- “What is a genetic counselor?” with Holly Zimmerman, MS CGC
Direct-to-Consumer Genetic Testing from National Human Genome Research Institute
 
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com
 
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.

Do I need prenatal genetic screening?

In this conversation, Blair Stevens, a prenatal genetic counselor, discusses the importance of prenatal genetics, focusing on screening and testing options available to expectant parents. The conversation covers the differences between screening and diagnostic testing, the types of conditions that can be detected, the accuracy of tests like NIPT or cell free DNA screening, and the role of genetic counselors in guiding families through the process. Additionally, the discussion touches on the emotional aspects of receiving test results and the importance of understanding insurance coverage for these tests.
On This Episode We Discuss:
Key Takeaways:
Prenatal screening is available for all pregnant individuals
Carrier screening can identify genetic conditions before pregnancy
Insurance coverage for prenatal screening and testing varies by provider
It’s important to discuss screening and testing options with a healthcare professional
Blair K. Stevens, CGC, is a board-certified genetic counselor with over 15 years of experience in reproductive genetics. Blair has a special interest in prenatal genetic screening and testing and counseling families with fetal anomalies identified on ultrasound. Blair is passionate about helping families understand and adjust to unexpected prenatal diagnoses.
Blair is an associate professor at McGovern Medical School at The University of Texas Health Science Center at Houston (UTHealth Houston) and serves as a clinical supervisor and research mentor for genetic counseling students, maternal fetal medicine fellow, pediatric genetics residents, and obstetrics and gynecology residents. She also serves as the Director of Prenatal Genetic Counseling Services.
Please subscribe to this podcast on Apple Podcasts, Spotify, or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com
 
Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.
 
Here are more resources related to today’s topic, prenatal genetic screening.
Findageneticcounselor.org to search for a genetic counselor near you
The American College of Obstetricians and Gynecologists (acog.org)
March of Dimes, “Prenatal Tests” (marchofdimes.org)
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com
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. 

What is a genetic counselor?

In this conversation, Holly, a genetic counselor, discusses the multifaceted role of genetic counselors, their training, and the importance of genetic counseling in healthcare. She explains the process of genetic counseling, the significance of family history, and the nuances of genetic testing. Holly also addresses the challenges and rewards of being a genetic counselor, emphasizing the emotional aspects of the job and the importance of patient advocacy. The conversation concludes with practical advice on how to find a genetic counselor and the significance of seeking help for genetic concerns.
 
On This Episode We Discuss:
Training and experience of genetic counselors.
The role of family history in assessing the need for genetic services.
What is involved in a genetic counseling session
How to find a genetic counselor
 
Holly Zimmerman (she/her) is the inaugural director of the Genetic Counseling Program at the University of Nebraska Medical Center (UNMC) housed in the College of Allied Health Professions (CAHP) and in partnership with the Munroe-Meyer Institute. She holds the rank of associate professor within her college and serves on several college-level committees including the Diversity, Equity, Inclusion, and Belonging steering committee and the Admissions Committee. She served a 3-year term as a faculty senator.
Holly serves on the board for the Association for Genetic Counseling Program Directors. She is an active member of the National Society of Genetic Counselors where she has served on numerous committees. Holly received her Bachelor of Science degree from the University of Southern Mississippi and her Master of Science in genetic counseling from the University of South Carolina. Prior to her current role, she worked clinically as a pediatric genetic counselor in Mississippi for over a decade. At the state's only academic medical center, Holly became involved with medical school education. She eventually earned a faculty position within the School of Medicine as a result of her work with medical students, pediatric residents, and maternal fetal medicine fellows. Holly was born and raised in Mississippi and now lives in Nebraska. Her parents provided opportunities early in life that fostered a love of people, their stories, and their experiences. She believes life is richer when connecting with others. She truly enjoys meeting new people and building relationships.
https://www.linkedin.com/in/hollyzimmerman-gceducation/
 
Please subscribe to this podcast on Apple Podcasts, Spotify, or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com
 
Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.
 
Here are more resources related to today’s topic, genetic counselors.
Findageneticcounselor.org to search for a genetic counselor near you
National Society of Genetic Counselors, www.nsgc.org
American College of Medical Genetics and Genomics, www.acmg.net
Check out Episode 3, “What does a geneticist do?” to learn more about clinical genetics and how genetic counselors and geneticists work together. 
 
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com
 
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. 

What does a geneticist do?

In this episode, Dr. Anna Hurst discusses the multifaceted role of geneticists in healthcare, the diagnostic process for genetic conditions, and the importance of understanding dysmorphology. She explains the evolution of genetic testing, the significance of genetic counseling, and the challenges faced in the field, including insurance issues. She shares her personal journey to becoming a geneticist, emphasizing the importance of specialized training and the need for more professionals in the field. 
 
On This Episode We Discuss:
Integration of genetics into healthcare
The importance of family history in genetic evaluations and risk assessments
The role of dysmorphology to provide insights into potential genetic syndromes
The various pathways to becoming a geneticist
 
Anna C.E. Hurst, MD, MS, is an associate professor of medical genetics in the department of genetics at the University of Alabama at Birmingham and an adjunct faculty member at the HudsonAlpha Institute for Biotechnology. She trained as a genetic counselor at the University of South Carolina School of Medicine (Columbia) and then completed her medical degree at the Medical University of South Carolina (Charleston). She is a board-certified pediatrician who completed pediatrics residency at Wake Forest Baptist Health (Winston-Salem, NC) and a medical genetics residency at UAB. Hurst is a clinician for the UAB Undiagnosed Disease Program, skeletal dysplasia clinic, and general genetics, and she provides genetic inpatient hospital consultations for patients at UAB and Children’s of Alabama. Her clinical interests include dysmorphology and congenital anomaly syndrome delineation, and she serves on the Scientific Advisory Board for Facial Dysmorphology Novel Analysis (FDNA). Her research focuses on expanding the availability of genomic sequencing for children with complex healthcare needs and incorporating phenotypic information into the interpretation of genomic data.
 
Please subscribe to this podcast on Apple Podcasts, Spotify, or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast player by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com
 
Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.
 
Here are more resources related to today’s topic, “What Does a Geneticist Do?”
American College of Medical Genetics, www.acmg.net
National Society of Genetic Counselors, www.nsgc.org
National Organization for Rare Disorders, www.rarediseases.org
 
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com
 
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.

Coming Soon- All Access DNA

For more information about this episode, visit allaccessdna.podbean.com, where you can also stream all episodes of the show. This link is also in the show notes for easy access.
 
Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com
 
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.
 
Please rate and review the podcast on Apple, Spotify, or wherever you listen. This helps other people, like you, discover the show.
 
Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.
 
The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. 
 
Thanks for listening! And join us next time!.

Introducing All Access DNA

What is DNA anyway? Should I consider genetic testing? Can my genes tell my future? All Access DNA answers the questions you have about genetics, healthcare, and popular issues in precision medicine as it relates to our daily lives. We may even veer into territory that is no longer science fiction but science reality. Host Kate Wilson utilizes her genetic expertise and experience to interview leaders and specialists in genomic medicine and research. Join us as we empower everyone to know more about DNA in an entertaining format.
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Learn more (and stream episodes) at allaccessdna.podbean.com. You can contact the show at AllAccessDNA@gmail.com or follow us on Instagram (at)AllAccessDNA
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