All Access DNA

In this conversation, Kate talks to Shannon Wieloch about the complexities surrounding therapeutic abortions, particularly in the context of heartbeat laws and genetic counseling. They explore the emotional and medical implications of these decisions, the role of genetic testing, and the impact of legislation on patient care. Shannon shares her experiences working with patients facing difficult choices in wanted pregnancies, emphasizing the need for compassion and understanding in these situations.  Keywords: abortion, therapeutic abortion, heartbeat laws, genetic counseling, patient care, emotional support, healthcare legislation, prenatal care, reproductive rights   Key Takeaways: The emotional weight of decisions surrounding pregnancy choices is profound. Heartbeat laws often prioritize legal definitions over medical realities. Genetic testing can provide crucial information but is not always necessary. Patients often face significant emotional and financial burdens when seeking care. Legislation can complicate access to necessary medical procedures. Many patients feel isolated in their experiences of making pregnancy decisions.   Guest Bio: Shannon M. Wieloch, MS, CGC, is a board-certified genetic counselor with more than 24 years of clinical and industry experience across reproductive, prenatal, infertility, and genomic medicine. She currently serves as Director of Genetic Counseling at Fairfax Cryobank and is the founder of Stork Genetics, LLC, where she provides patient-centered genetic counseling. Shannon has served in senior clinical, product, and program management roles at Genome Medical, Mayo Clinic, CooperGenomics, and major academic medical centers. She has authored numerous peer-reviewed and professional publications, blog posts, and educational resources, and has regularly contributed to national conferences, podcasts, and professional committees within the National Society of Genetic Counselors. Here are more resources related to today’s topic: Links to Shannon’s pages: https://www.facebook.com/storkgenetic/ https://www.instagram.com/storkgenetics/ https://www.linkedin.com/company/stork-genetics “What You Need to Know About ‘Fetal Heartbeat’ Bills” by Madison Feller, Elle, published May 7, 2019 “Doctors’ organization: calling abortion bans ‘fetal heartbeat bills’ is misleading” from The Guardian Center for Reproductive Rights National Network of Abortion Funds 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   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. Our Social Media Lead is Casey Lepley.

In this heartfelt interview, Abby Milburn shares her journey as a mother of a child with Down syndrome and Sanfilippo syndrome, a rare neurodegenerative disease. She discusses diagnosis challenges, advocacy efforts, and the importance of research and policy changes to support children with rare diseases.  Sanfilippo syndrome, Down syndrome, rare diseases, medical advocacy, genetic testing, FDA approval, gene therapy, medical research, advocacy, rare pediatric treatments   Key Topics: Sanfilippo syndrome diagnosis and symptoms Challenges in medical advocacy and policy The role of genetic testing and family history Impact of FDA approval process on treatments Importance of awareness and community support   Abby Milburn is a wife and stay at home mom to four children 5 years old and under. Her oldest daughter, Lottie, is extremely unique as she has both Down syndrome and Sanfilippo Syndrome. Lottie’s Cure Sanfilippo Foundation Page: https://give.curesanfilippofoundation.org/campaign/lottie-milburn-or-fighting-to-cure-sanfilippo/c716615 Instagram and Facebook handle: @letssavelottie   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   Here are more resources related to today’s topic: Lottie’s Cure Sanfilippo Foundation Page: https://give.curesanfilippofoundation.org/campaign/lottie-milburn-or-fighting-to-cure-sanfilippo/c716615 Cure Sanfilippo Foundation: https://curesanfilippofoundation.org/ Senate Hearing Special Committee on Aging: From Regulator to Roadblock: How FDA Bureaucracy Stifles Innovation UX111 Gene Therapy for Sanfilippo syndrome type A Ask Congress to urge the FDA to take swift action on rare disease treatments   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. Our Social Media Lead is Casey Lepley.

Chronic pain, invisible illness, Black health. In this conversation, Wunmi Bakare shares her profound journey living with sickle cell disease, detailing the challenges and triumphs she faced from childhood through adulthood. She discusses her experience with a stem cell transplant, the impact it had on her life, and the ongoing challenges she navigates post-transplant. Wunmi emphasizes the importance of patient advocacy, the need for compassionate healthcare, and the creation of Sickle Cell Prodigy, an organization aimed at supporting individuals with sickle cell disease and their families. The conversation highlights the resilience of patients and the importance of community support in managing chronic illnesses.   Key Takeaways: Living with sickle cell involves navigating stigma and misunderstanding. A stem cell transplant can significantly change a patient's life. Post-transplant, patients still face challenges and pain management. Advocacy is crucial for patients with invisible illnesses. Compassionate care from providers can improve patient experiences. Sickle Cell Prodigy aims to support patients and caregivers alike including Pre=Therapy Warriors and Post-Therapy Survivors.   Wunmi Bakare is a multicultural citizen and pioneering advocate in the sickle cell and rare disease community, known for her commitment to inclusion and stigma eradication. With a fervent dedication to advancing awareness and understanding, Bakare leverages both proactive and reactive media engagement to transform perceptions of sickle cell disease. Her lived experience fuels her advocacy and informs her leadership roles on the advisory boards for the National Health, Lung & Blood Institute, the American Board of Medical Specialties, Beam Therapeutics, Vertex Pharmaceuticals, Pfizer, Fulcrum, and Healthful Data as well as her board memberships with the Sickle Cell Knowledge & Information Network, Sickle Cell Disease Partnership, and The Gift of Adoption Fund.  Diagnosed with the severe HbSS form of sickle cell disease at just 18 months old, Bakare's grueling journey led her to participate in a groundbreaking clinical trial at the NIH, culminating in a successful allogeneic stem cell transplant in 2019. Bakare thrives as the Founder of WBPR Agency working across diverse corporate disciplines and providing strategic media counsel to top brands. In 2020, she launched #SickleCellProdigy, a patient-driven nonprofit organization dedicated to redefining survivorship for individuals living with sickle cell disease who are exploring or recovering from transformative therapies, including bone marrow transplant and gene therapy.   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   Here are more resources related to today’s topic: Sickle Cell Prodigy website Though The Genes Podcast   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. Our Social Media Lead is Casey Lepley.

Primary Care and Genetics: Bringing DNA Into Everyday Healthcare. Primary care is often the first stop in healthcare—but where does genetics fit in? We unpack what’s realistic, what’s hype, and what patients and clinicians should actually expect. This conversation explores the integration of genetics into primary care, highlighting the importance of genetic testing and counseling in improving patient outcomes. The speakers discuss the evolving role of primary care physicians in addressing genetic health, the need for collaboration with genetic counselors, and the growing awareness among patients regarding genetic testing. They emphasize the necessity of ongoing education and advocacy for genetic professionals within the healthcare system.   Key Takeaways: Genetic testing can aid in preventative care and early diagnosis. Patients often bring their own genetic testing results to primary care. Genetic counseling can support primary care physicians in managing genetic concerns. Integration of genetics into primary care can improve patient outcomes. Genetic testing is not a one-time event; it may require re-evaluation. Patients are becoming more informed and proactive about genetic health. Collaboration between genetic counselors and primary care is essential.   Mylynda B. Massart, M.D., Ph.D., is a board-certified Family Medicine physician at UPMC, and associate professor at the University of Pittsburgh.  She currently serves as the founder and Medical Director of the UPMC Primary Care Precision Medicine clinic and as the Associate Director of Clinical Services for the Institute for Precision Medicine.  Dr. Massart is co-director of the HUB Core over Research Inclusivity and Community Partners Core at the Clinical and Translational Science Institute (CSTI).  Her research interests are in developing education in genetics and precision medicine for primary care providers and trainees and being a research catalyst facilitating the inclusion of underrepresented populations in biomedical research.  She teaches residents and medical students in her clinic and at the hospital and serves as medical director for Bethany Hospice.  Currently, Dr. Massart is one of the co-investigators for the All of Us Pennsylvania research project working on community education and engagement. In addition, she is working as a co-investigator to create the local Discovery Biobank at the University of Pittsburgh and developing systems to return precision medicine results to providers and patients.  Dr. Massart leads the Community Engagement Alliance Consultative Resource (CEACR), a partnership between the University of Pittsburgh CTSI and Community-Campus Partnerships for Health.   Natasha Berman (she/her) MA, MS, MPH, CGC is a clinical genetic counselor at the UPMC Department of Family Medicine who works within the primary care precision medicine clinic. She provides direct patient care to patients for a variety of indications. She has coauthored multiple textbook chapters covering family medicine genetic topics. Her primary areas of research include improving equitable genetics care.   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   Here are more resources related to today’s topic: Findageneticcounselor.org to search for a genetic counselor near you Access to Genetic Counselor Services Act   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. Our Social Media Lead is Casey Lepley.

Building support, navigating the emotional journey of having a medically complex child. In this conversation, Madeline Cheney discusses her journey as a parent of a child with a rare genetic condition and the creation of her podcast, The Rare Life. She emphasizes the importance of building a community for parents facing similar challenges, the emotional impact of being a carrier of a genetic condition, and the role of advocacy in medical care. Madeline shares her experiences with grief, resilience, and the need for self-care, while also outlining the future goals of her nonprofit organization to support families in the NICU and beyond.   Key Takeaways: The Rare Life podcast was created to build a community for parents of children with disabilities. Navigating a rare diagnosis can be overwhelming, but support from others is vital. Advocacy is essential in medical care for children with disabilities. Building resilience is a gradual process for parents facing challenges.   Madeline is the host and founder of The Rare Life, a nonprofit podcast and community for parents of people with medical complexities and disabilities. She is mom to 10 year old Wendy and 7 year old Kimball who has a rare syndrome. Her experiences navigating medical complexities with zero community inspired the creation of The Rare Life. When she isn't hanging out with her family or working, she loves soaking in a hot bath with a good book or watching an old episode of Murder She Wrote.   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   Here are more resources related to today’s topic: The Rare Life website and podcast Remember the Girls - advocating for females impacted by X-linked conditions   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. Our Social Media Lead is Casey Lepley.

Aging, genetics, and lifestyle. In this conversation, Daniel Tausan discusses the concept of longevity, focusing on biological age, biomarkers, and the interplay between genetics and lifestyle. He emphasizes the importance of understanding biological age as a measure of health rather than just chronological age. The discussion covers various biomarkers, the significance of blood tests, and how lifestyle choices impact aging. Daniel also touches on the role of telomeres, lifestyle habits for longevity, and the latest breakthroughs in longevity science. Philosophical perspectives on aging and the future of longevity research are explored, highlighting the importance of quality of life and the need for a cultural shift in how we view aging and death.   Key Takeaways: Biological age is a measure of health, not just chronological age. Understanding biomarkers can help assess health and aging. Genetics and lifestyle both play crucial roles in aging. Telomeres are important but not the sole factor in aging. Quality of life is essential in discussions about aging.   Daniel Tausan holds a graduate degree from the University of British Columbia in Stem Cell Biology with a Bachelor of Science in General Biology. He worked in research in the molecular profiling of exercise, looking into comprehensive blood panels in search of biomarkers for predictive health analytics with Molecular You and UBC’s School of Kinesiology to develop methods for biological age calculation.   He spent his early 20s with the Canadian National Waterpolo Team and coached the next generations of athletes to participate in the youth Pan-American games and World Championships. He personally trained clients for general fitness goals and athletic performance and continued to share the biological knowledge of the molecular world from his scientific pursuits.   Asthma, allergies and gastrointestinal challenges throughout his early years kept him eager to explore regenerative principles and the healthcare systems. Although the academic and industry surrounding the molecular biological revolution were exploding few professionals were present to help the public interact and integrate with the newfound biological knowledge. With a love for education and working directly with people he stepped away from academics. He launched Timeline Sciences to put “you” on the timeline aligned with your unique genome and goals.   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   Here are more resources related to today’s topic: Daniel’s website, Timeline Sciences “Achieving health human longevity: A global grand challenge” Science Translational Medicine journal “Healthy lifestyle in late-life, longevity genes, and life expectancy among older adults: a 20-year, population-based, prospective cohort study” The Lancet “The validity of Blue Zones demography: a response to critiques” The Gerontologist Ageing and health - an article from the World Health Organization   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. Our Social Media Lead is Casey Lepley.

Flexibility, pain, and fatigue are part of hypermobility EDS. In this conversation, Dr. Taylor Kerrins discusses Ehlers-Danlos Syndrome (EDS), particularly hypermobile EDS, covering its definition, symptoms, diagnosis, and management strategies. He shares personal experiences with the condition, the challenges of obtaining a diagnosis, and the importance of physical therapy and exercise. The discussion also touches on genetic testing and available support resources for patients. Taylor emphasizes the need for ongoing research and understanding of EDS, highlighting the complexities of the condition and the importance of community support.   Key Takeaways: EDS is a connective tissue disease with various types. Joint dislocations are common in individuals with hypermobile EDS. There is no specific genetic test for hypermobile EDS. Exercise is extremely helpful but must be tailored to the individual.. Support groups provide valuable resources and community for EDS patients. Ongoing research is essential for understanding EDS better.   Dr. Taylor Kerrins is a Clinical Assistant Professor of Medical Genetics & Genomics at the Medical University of South Carolina.   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   Here are more resources related to today’s topic: The Ehlers Danlos Society Information on hEDS from the Marfan Society American Academy of Family Physicians handout from 2021 The Norris Lab at MUSC   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. Our Social Media Lead is Casey Lepley.

Teratogens. Medications. Infections. Safe in Pregnancy. In this conversation, we explore the safety of exposure to certain things during pregnancy such as alcohol, beauty products, and yes even Tylenol. We learn more about how an agent or exposure is evaluated as being teratogenic as well as resources for pregnant individuals with questions.   Key Takeaways: Teratogens refers to an exposure (drug, chemical, infection, radiation, or substance) that can interfere with growth or development of an embryo or fetus.  Every pregnancy has a background risk of 3% for birth defects, unrelated to exposures or family history. The timing, dosage, and other risk factors play a role in the impact of a potential teratogen. It’s crucial to differentiate between correlation and causation in studies. Pregnant individuals should consult healthcare providers about medication use.   Nevena is a board certified genetic counselor and an assistant professor at the University of South Florida (USF), division of Maternal Fetal Medicine and serves as the Program Coordinator and Teratogen Information Specialist at MotherToBaby Florida. In addition to providing exposure counseling at MTB Florida and USF Exposures Clinic, she provides prenatal and preconception genetic counseling in various clinics across the Tampa Bay area. Nevena is the Associated Program Director and provides both clinical supervision and coursework instruction for students form the USF Genetic Counseling Program. Nevena earned her MS in Genetic Counseling from the University of Texas Health Science Center in Houston in 2012. She is the president elect of Organization of Teratogen Information Services (OTS). The views and opinions shared on the podcast are her own and do not represent those of her employer.   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   Here are more resources related to today’s topic: Findageneticcounselor.org to search for a genetic counselor near you Birth Defects Registry & Prevention Mother to Baby website Human Teratogens course    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. Our Social Media Lead is Casey Lepley.

Transgender and gender diverse cancer care, privacy, community safety. On this episode of All Access DNA, we talk to Dr. Mittendorf about hereditary cancer considerations for people who are transgender and gender diverse. We discuss management guidelines, cancer risks and how knowing hereditary cancer risk may inform medical decisions. The conversation also delves into the significant concerns surrounding the privacy of medical data for transgender individuals. It highlights the fear of being identified as trans in medical records and the potential repercussions of such identification, especially in light of recent legal actions involving healthcare providers.    On This Episode We Discuss: The ways gender affirming care can be impacted by hereditary cancer risk. The effect of gender dysphoria in making medical decisions. Hormone therapy (HRT) and cancer risk Privacy concerns are heightened for the transgender community. Recent instances have raised alarms about data security in healthcare. Community safety is a significant concern related to medical data. There is a need for better protections for sensitive health information.   Dr. Mittendorf is an interdisciplinary scientist whose current research focuses on translational genomics and cancer care delivery, especially as it impacts populations with reduced access to care. They have extensive experience in genomic evidence synthesis, data modeling, web application development, community-driven research design, implementation science, and genomic applications in care delivery. They have cross-disciplinary training that covers epidemiology, qualitative research, bioethics, and informatics. Their PhD in biochemistry, with a focus on molecular biophysics, gives them a unique foundation to understand the molecular mechanisms at play in the setting of clinical genomics.   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   Here are more resources related to today’s topic: Dr. Mittendorf’s website that includes links to research and resources CHESTcare website- CHESTcare stands for Cancer & Hereditary Risk Education & Support for Transgender & Nonbinary Individuals. CHESTcare is a resource for people who have had or are planning “top” surgery (gender-affirming mastectomy) or are taking or planning to take testosterone. Our goal is to empower you to make informed decisions about your health and cancer risk. YouTube video on Screening, prevention and gender affirming care for transgender people with mutations Hereditary cancer care for transgender and nonbinary people from FORCE Episode 6- How accessible is genetic testing? With Deanna Darnes Episode 19- Is cancer genetic? With Barry Tong Episode 26- Does genetics influence sex and gender? With Kim Zayhowski   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. 

Patient zero, memoir, understanding. In this conversation, Steven Crane shares his personal journey living with spina bifida, discussing the challenges he faced from birth through adulthood. He reflects on the support from his family, the medical treatments he underwent, and the impact of his condition on his life. Steven emphasizes the importance of advocacy, understanding, and resilience, and how he found purpose through writing about his experiences. He also addresses the complexities of navigating multiple health conditions and the role of healthcare providers in supporting patients.   Key Takeaways: Spina bifida is a multifactorial condition with varying degrees of impact. Advocacy for oneself is essential in navigating healthcare. Writing can be a therapeutic outlet for personal experiences. Being a patient zero can be both a burden and a responsibility. Empathy and understanding from healthcare providers can significantly affect patient outcomes. There are often hidden blessings in challenging circumstances. Community and shared experiences can foster healing and connection.   Steven Crane is the author of the memoir "I Can Appreciate That", the novel "Staring at the Ceiling", numerous essays, and more than a million words of advertising copy. A graduate of the University of South Carolina, Steven lives in Marietta, GA, with his wife Carie. Their two sons are navigating college at University of GA and GA Southern. More at: www.brainsofsteel.com. Facebook.com/ICATStory Instagram: @icanappreciatethat   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   Here are more resources related to today’s topic: Steven’s website Purchase “I Can Appreciate That” Information on Spina Bifida from Mayo Clinic Spina Bifida Association   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. Our Social Media Lead is Casey Lepley.

Narrative medicine, story telling, BRCA and breast cancer. In this conversation, Sarah shares their personal journey with being a BRCA1 carrier and experiences with breast cancer. She discusses the emotional weight of genetic risk, the complexities of identity as a previvor, and the importance of narrative in understanding and coping with illness. Sarah also reflects on their professional background in medical anthropology and genetic counseling, emphasizing the need for patient-centered care and the power of storytelling in healthcare. The discussion touches on themes of grief, hope, and the ongoing nature of living with a genetic condition, culminating in Sarah's insights on how poetry and narrative can help articulate the complexities of these experiences.   Key Takeaways: Poetry allows for flexibility in expressing complex emotions. Language can create a sense of community but also exclusion. Grief is a central part of living with a genetic condition. Precision medicine must consider the holistic care of patients. Sarah Roth (@othersarah) is a writer, educator, and genetic counselor based in Baltimore. Her literary work appears in Columbia Journal, Denver Quarterly, Notre Dame Review, and elsewhere, and she ​is an assistant poetry editor at Asymptote Journal and editor in chief of Tendon Magazine. Sarah holds an MFA in Creative Writing from University of Notre Dame and is currently completing her PhD at Johns Hopkins University. 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   Here are more resources related to today’s topic: Sarah’s website  Synapsis: A Health Humanities Journal Tendon Magazine Episode 19- How does genetics impact cancer? With Barry Tong   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. Our Social Media Lead is Casey Lepley.

Heart disease and lack of genetic testing. In this conversation, Ana Morales discusses the critical signs of genetic heart disease, particularly focusing on early onset conditions and the importance of recognizing red flags such as elevated cholesterol and complications during/after pregnancy. She emphasizes that these health issues should not be ignored and highlights the need for awareness and proactive health management.   Key Takeaways: Having early onset heart disease of any kind is not normal. Early onset is defined as less than age 60. Severely elevated cholesterol, especially if it runs in families, is concerning. Onset of heart disease during or soon after pregnancy is a red flag. Thoracic aortic aneurysm at any age should not be ignored. Over 95% of people who have a genetic heart condition have not had genetic testing. Hereditary cardiac disease is underdiagnosed. Proactive health management can save lives.   Ana Morales is an Associate Professor at the Geisinger Department of Genomic Health, a board-certified genetic counselor, and a Translational Health Sciences Ph.D. candidate. Her dissertation, titled "Development of a Guideline-Based Innovation to Support the Genetic Evaluation of Cardiomyopathy and Arrhythmia: An Exploratory Mixed Methods Study," aims to address existing guideline gaps by developing an implementation plan for an innovation designed to support the genetic evaluation of cardiomyopathy and arrhythmia. Ana's prior work includes evaluating genetic testing utilization, highlighting the underutilization of cardiomyopathy genetic testing. She has also contributed to key literature, including co-authoring the American College of Medical Genetics and Genomics/Heart Failure Society of America guideline on the genetic evaluation for cardiomyopathy and the National Lipid Association guideline on familial hypercholesterolemia (FH).   Currently, Ana serves as the Principal Investigator for the NIH-funded IMPACT-FH study, which investigates implementation science-based strategies to promote cascade genetic testing in primary care. Ana has held professional leadership roles, including membership in the ClinGen Cardiovascular Disease and Ancestry/Diversity Working Groups, as well as serving as the 2019 President of the American Board of Genetic Counseling. She currently chairs the Clinical and Laboratory Standards Institute's Standard 29 group, a position dedicated to fostering effective communication and collaboration with clinicians and test utilization management.   Outside of her professional work, Ana enjoys spending quality time with family and friends, exploring new foods, dancing, appreciating visual art, and diving into diverse non-fiction books.   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   Here are more resources related to today’s topic: Findageneticcounselor.org to search for a genetic counselor near you DCM Foundation Implications of Genetic Testing in Dilated Cardiomyopathy Find a Cardiomyopathy Specialist Genetic Cardiomyopathy Awareness Consortium Global Heart Hub for non-US residents Episode 8- Should I consider genetic testing for dilated cardiomyopathy? With Greg Ruf Episode 9- How does family history shed light on sudden cardiac death? With Dr. Susan Liebman   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. Our Social Media Lead is Casey Lepley.

Weight management, epigenetics, and childhood obesity. In this conversation, Dr. Evan P Nadler discusses the complexities of childhood obesity, emphasizing that it is a disease influenced by genetics, maternal health, and lifestyle factors. He highlights the importance of understanding the role of epigenetics and the in utero environment in the development of obesity. The discussion also covers the myths surrounding childhood obesity, the impact of genetics versus lifestyle choices, and the potential benefits of genetic testing. Dr. Nadler advocates for a comprehensive approach to treatment, including lifestyle changes and medical interventions, while encouraging parents to seek help and to not feel shame about looking for answers.   Key Takeaways: Obesity is a disease, not a lifestyle choice. Genetics and epigenetics play significant roles in obesity Genetic predisposition can influence lifestyle choices. Genetic testing can help identify risks for obesity. Weight loss challenges may have genetic underpinnings. Food addiction and cravings are influenced by biology. The treatment landscape for obesity is evolving rapidly. Evan P. Nadler MD served as Co-Director of the Children’s National Obesity Programs and Director of the Child and Adolescent Weight Loss Surgery Program at Children’s National Hospital from 2009 until 2023. He was also a tenured Associate Professor of Surgery, and Pediatrics, at The George Washington University School of Medicine & Health Sciences and continues there as an Adjunct Associate Professor. Before moving to Washington DC, he was the Director of Minimally Invasive Pediatric Surgery at the New York University School of Medicine where he participated in US Food and Drug Administration-approved studies using laparoscopic adjustable gastric banding in adolescents with obesity. His current pursuits include pediatric obesity treatment program development as a Founder of ProCare Telehealth, authoring a book on obesity, and educating the public about obesity via his YouTube channel, website, and media appearances. Dr. Nadler is an international leader in the field of child and adolescent obesity, has authored multiple publications and textbook chapters on the topic of pediatric bariatric surgery, and was one of the founding members of the Childhood Obesity Committee of the American Pediatric Surgery Association.    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   Here are more resources related to today’s topic: Dr. Nadler’s YouTube Channel: https://www.youtube.com/@obesityexplained American Academy of Pediatrics Clinical Practice Guideline for the Evaluation and Treatment of Children and Adolescents with Obesity NPR Article about the AAP Guideline and concerns about the guideline Testing for rare genetic causes of obesity: findings and experiences from a pediatric weight management program from Nature Diagnostic yield of genetic testing for non-syndromic early-onset obesity in a multidisciplinary pediatric obesity clinic- abstract from Genetics in Medicine   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. Our Social Media Lead is Casey Lepley.

Diet, genetics, and lifestyle. In this episode we talk to Natalie Samson, a genetic counselor with certification in Integrative and Functional Nutrition who is also a certified Integrative Health Coach. We talk about the role of genetics and molecular/biochemical pathways that affect diet and weight. Natalie tells us about the role of genetic testing in nutrition management and functional health as well as the importance of working with a trained professional when considering this type of testing. We also discuss nutrigenetic testing for children and the integration of nutrigenomics into mainstream medicine.   Key Takeaways: Nutrigenomics looks at how genes and nutrition interact and how diet can affect gene expression and protein function. Genetic pathways can provide insights into diet. Weight is influenced by multiple factors, including genetics. Genetics can help tailor interventions for individuals. It is important to understand the content of the genetic testing and consult with a professional before and after testing.   Natalie is a board certified genetic counselor hoping to transform healthcare through personalized, integrative, and preventative approaches. She also obtained her Integrative Health Coach Certification and completed her Integrative and Functional Nutrition Certification. She established her own practice, Golden Genetics to introduce an integrative approach to genetic counseling and testing, combining it with nutrition and nutrigenomics.   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   Here are more resources related to today’s topic: Findageneticcounselor.org to search for a genetic counselor near you Natalie’s practice- Golden Genetics and email: natalie@goldengeneticshealth.com   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. Our Social Media Lead is Casey Lepley.

Grief, genetics, and accessible testing. In this episode, Matt Goldstein shares his personal journey through grief after the loss of his daughter, Javi, who was diagnosed with Tay-Sachs disease. He discusses the impact of this experience on his career, leading him to focus on preventive genetics and the mission of JScreen, an organization dedicated to providing genetic testing and support. We explore the importance of preconception carrier screening, the advancements in genetic technology, and the emotional aspects of navigating grief and loss. Matt emphasizes the power of genetics in preventing diseases and the support systems available for families.   Key Takeaways: Genetic testing technology has advanced significantly in recent years. Faith and rituals can help navigate the pain of loss. Genetic counselors play a crucial role in the testing process. JScreen provides education and support for genetic testing and aims to make genetic testing accessible to all families.   Dr. Matt Goldstein, MD, PhD, is a dedicated physician-scientist and entrepreneur with a passion for advancing genetic research. As CEO of jscreen, he focuses on providing accessible, life-saving genetic testing to empower individuals with critical health insights. With extensive experience in biotech, Dr. Goldstein has led major initiatives, including founding and guiding companies like Tango Therapeutics and Neon Therapeutics through pivotal clinical developments and strategic partnerships.   A graduate of Stanford University's MD/PhD program, he completed his clinical training at Harvard Medical School. Driven by both professional and personal experiences, including the loss of his eldest daughter, Havi, to Tay-Sachs disease, Dr. Goldstein is deeply committed to jscreen's mission of proactive health management.   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   Here are more resources related to today’s topic: J Screen website: https://www.jscreen.org/ Matt Goldstein’s LinkedIn: https://www.linkedin.com/in/matthew-g-27983942/ J Screen website: https://www.instagram.com/getjscreened/   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. Our Social Media Lead is Casey Lepley.

“The more innovation happens, it doesn’t mean a thing if patients can’t have access to it.” Today’s episode of All Access DNA features Rome Madison. Rome’s podcast- Genetics for Healthcare- aims to educate patients about genetic information and its relevance to their healthcare. Rome shares his personal journey from a sales background to podcasting, emphasizing the need for patient advocacy and access to genetic information. We explore the balance between commercial goals and ethical responsibilities in healthcare, the challenges of navigating insurance coverage for genetic tests, and the role of technology in improving patient access to precision medicine. The discussion highlights the importance of empowering patients with knowledge and encouraging them to advocate for their health.   Key Takeaways: Genetics for Healthcare podcast aims to educate people about genetic information There is a gap in the US for patient access to precision medicine Personal experiences are motivation for healthcare advocacy Technology can improve access to precision medicine Patient education is crucial for informed healthcare decisions Genetics should be a routine part of healthcare conversations Rome Madison helps people and organizations in the life science industry increase confidence, embrace uncertainty and navigate chaos to rise and win in the market. With over 20 years of experience leading sales teams and go-to market strategy for successful start-ups and new products, Rome has Unreasonable Confidence that cancer and other chronic genetic diseases can be prevented, detected early, treated effectively and cured. Rome has given more than 500 live speeches and is a charismatic virtual presenter that keeps your audience glued to the screen and engaged with his content. He has appeared on more than 50 tv and radio shows across the US as a precision medicine expert, and has been a featured speaker at the Consumer Electronics Show on The Future of Healthcare. Rome’s podcast, Genetics for Healthcare: A Podcast for Patients, unites major healthcare stakeholders to close the gap of innovation and patient access to precision medicine. He is co-creator and host of the award-winning Precision Medicine Podcast, Google’s #1 rated podcast on the topic of next-generation cancer care, with listeners in over 108 countries.   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   Here are more resources related to today’s topic: Genetics for Healthcare: A Podcast for Patients   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. Our Social Media Lead is Casey Lepley.  

Prostate cancer, male infertility, and underserved populations. Brittany Szymaniak discusses the complexities of hereditary cancer risks, particularly focusing on prostate cancer and the role of BRCA genes. She emphasizes the importance of genetic counseling and testing, especially for men, and addresses the challenges in male reproductive health and infertility. The discussion also covers insurance aspects related to genetic testing and the significance of family communication regarding genetic results. Brittany highlights the need for increased awareness and research in men's health genetics, particularly for underrepresented populations. Key Takeaways: BRCA1 and BRCA2 mutations can affect both men and women. Men often overlook the importance of family history in cancer. Family communication about genetic results is essential. Many men are less likely to pursue genetic testing than women. Research in male cancer genetics is lagging behind. Diverse populations are underrepresented in genetic research. Brittany Szymaniak received her PhD in Genetics from the University of Rochester in 2016 and went on to complete her masters in Genetic Counseling from Northwestern University in 2018. That year Brittany joined the Urology Department at Northwestern Medicine as part of the Cancer Genetics Program, where she focuses on prostate/GU genetics, as well as male infertility. She also supports Digestive Health for inherited GI evaluations. Brittany is part of the core team that developed Northwestern’s EDGe (Early Detection in Genetics) Program, which provides follow-up care with patients with inherited cancer predisposition conditions. Under this program she serves as the point of contact for both Northwestern Medicine's BRCA+ Men's Clinic and VHL Clinical Care Center. She also serves as a panel member for the NCCN Genetic/Familial High-Risk Assessment: Colorectal, Endometrial, and Gastric Guidelines. Brittany is a faculty member with Northwestern's Genetic Counseling graduate program, serving as a thesis advisor, lecturer, and supervisor. 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 Here are more resources related to today’s topic: Findageneticcounselor.org to search for a genetic counselor near you HIS Breast Cancer Awareness The Prostate Cancer Foundation Resolve: The National Infertility Association   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. Our Social Media Lead is Casey Lepley.

Flexibility, pain, and fatigue are part of hypermobility EDS. In this conversation, Dr. Taylor Kerrins discusses Ehlers-Danlos Syndrome (EDS), particularly hypermobile EDS, covering its definition, symptoms, diagnosis, and management strategies. He shares personal experiences with the condition, the challenges of obtaining a diagnosis, and the importance of physical therapy and exercise. The discussion also touches on genetic testing and available support resources for patients. Taylor emphasizes the need for ongoing research and understanding of EDS, highlighting the complexities of the condition and the importance of community support.   Key Takeaways: EDS is a connective tissue disease with various types. Joint dislocations are common in individuals with hypermobile EDS. There is no specific genetic test for hypermobile EDS. Exercise is extremely helpful but must be tailored to the individual.. Support groups provide valuable resources and community for EDS patients. Ongoing research is essential for understanding EDS better.   Dr. Taylor Kerrins is a Clinical Assistant Professor of Medical Genetics & Genomics at the Medical University of South Carolina.   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   Here are more resources related to today’s topic: The Ehlers Danlos Society Information on hEDS from the Marfan Society American Academy of Family Physicians handout from 2021 The Norris Lab at MUSC   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. Our Social Media Lead is Casey Lepley.  

Pediatric cancer and genetic testing. In this conversation, Sarah Scollon discusses the complexities of childhood cancer, particularly the genetic factors that may contribute to its development. She explains the differences between tumor and germline testing, the importance of identifying children at risk for hereditary cancer syndromes, and the evolving guidelines for genetic testing in pediatric oncology. The discussion also touches on the psychosocial aspects of genetic counseling, informed consent, and the implications of genetic testing for families. Sarah emphasizes the need for ongoing research and the importance of communication with families about genetic risks and testing options.   Key Takeaways: About 8 to 18 percent of kids with cancer have genetic mutations. Tumor testing focuses on mutations in the tumor itself. Germline testing looks at inherited genetic changes. Genetic testing can lead to tailored surveillance plans. Informed consent is crucial in genetic testing discussions. Cascade testing can benefit family members of affected children. The landscape of genetic testing is rapidly evolving. Access to care and psychosocial support are vital for families. Sarah Scollon is an Assistant Professor in the Department of Pediatrics at Baylor College of Medicine (BCM) and lead genetic counselor for the Texas Children’s Cancer and Genomics Program. She has served in dual clinical and research roles across the course of her career. Ms. Scollon has had a longstanding dedication to the care of children and families affected by cancer. She is an advocate for the incorporation of genetic counseling into pediatric cancer care. She works to educate others on the role genomics and precision oncology can play in the care of patients with pediatric cancer and their families both from a clinical and psychosocial standpoint. Her research interests engage the overarching themes of (1) pediatric cancer predisposition and precision oncology (2) optimization of patient-provider communication and education and (3) adaptation of genetic counseling practice for implementation of evolving technologies for care of pediatric cancer patients. 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   Here are more resources related to today’s topic: Sarah Scollon’s Contact Info and Published Papers Findageneticcounselor.org to search for a genetic counselor near you Pediatric Oncology Series- includes recommendations American Association for Cancer Research- Childhood Cancer Awareness page   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. Our Social Media Lead is Casey Lepley.

Navigating child heart failure and mitochondrial disease. Dr. Heather Gatcombe shares her personal journey as a physician and mother navigating the complexities of mitochondrial disease and heart failure in her son. She discusses the challenges of diagnosis, the emotional toll of medical crises, and the journey through heart transplant. Dr. Gatcombe emphasizes the importance of understanding mitochondrial disease, the role of advocacy, and the potential future of mitochondrial medicine, including the impact of new treatments and the need for continued support and awareness.   Key Takeaways: Mitochondrial disease can be difficult to diagnose due to its varied presentation. Heart failure in children can arise from mitochondrial dysfunction. Transplantation is a complex process that requires a multidisciplinary approach. Post-transplant care involves managing potential complications and medication side effects. Advocacy is crucial for rare diseases to ensure access to necessary treatments. New medications can significantly improve the quality of life for patients with mitochondrial disease. And one of these medications is at risk of being discontinued meaning more people going back on the heart transplant list.   Dr. Heather Gatcombe is the mother of a child with mitochondrial disease and is on the Board of Trustees of the United Mitochondrial Disease Foundation and the Board of Directors of Enduring Hearts. She is an assistant professor at Emory University School of Medicine. The views expressed here are her own and do not represent those of Emory University. https://www.linkedin.com/in/heather-gatcombe-md-3891875/ https://www.instagram.com/heathergatcombe/   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   Here are more resources related to today’s topic: Join the fight for Elamipretide and ask FDA to approve now! United Mitochondrial Disease Foundation Mito Action- a patient advocacy group MitoCanada Mito Foundation in Australia Transplant Families- resources and support for families navigating pediatric transplantation Enduring Hearts   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. Our Social Media Lead is Casey Lepley.