All Access DNA

“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:

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:

Any inquiries on the podcast can be sent to [email protected]

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:

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:

Any inquiries on the podcast can be sent to [email protected]

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:

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:

Any inquiries on the podcast can be sent to [email protected]

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:

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:

Any inquiries on the podcast can be sent to [email protected]

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:

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:

Any inquiries on the podcast can be sent to [email protected]

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.

Neurodiversity advocacy and a genetic condition associated with autism. In this conversation, Jacalyn Lee shares her journey into advocacy, driven by her experiences as a mother of a child diagnosed with DEAF1 Associated Neurodevelopmental Disorder (DAND). She discusses the emotional complexities of receiving a diagnosis, the importance of community support, and the establishment of the DAND Alliance to raise awareness and promote research. Jacalyn emphasizes the critical role of genetic testing in understanding neurodevelopmental disorders and offers resources for families navigating similar challenges. The conversation concludes with key takeaways on advocacy, awareness, and the importance of checking in on friends in the neurodivergent community.

Key Takeaways:

Jacalyn Lee is a neurodiversity advocate, drawing from her personal journey as a mother to a child with an ultra-rare genetic condition called DEAF1 Associated Neurodevelopmental Disorder (DAND). After her daughter’s DAND diagnosis, Lee became credentialed as a Non-Attorney Special Education Advocate and launched The Atypical Advocate, a Substack newsletter that shares the complexities—and joys!—of raising a neurodivergent child with complex medical needs. Lee currently leads efforts to advance awareness and critical scientific research for DAND through The DAND Alliance, the nonprofit she founded.

Lee believes in the power of storytelling to drive awareness, inclusion, and systemic change. It is through her writing that Lee aims to provide practical resources, community, and emotional support for parents, while fostering greater understanding and empathy for neurodivergent families and their atypical families.

As a speaker, Lee is frequently invited to share insights on creating neuro-affirming communities, speaking with children about autism, navigating the early days of a disability diagnosis, and more. From hospitals and universities to media outlets and The Atypical Advocate, she weaves personal experience with actionable guidance to help families feel less alone and more empowered.

In addition to her advocacy work, Lee has more than 20 years of experience in architecting communications strategy for iconic global and startup brands in the consumer tech, media, ecommerce, and wellness industries, including Equinox Media, The Knot, Care.com, and Gopuff. Her professional background has honed her ability to build meaningful connections and amplify important messages—skills she now channels into her mission to champion neurodiversity.

Jacalyn Lee lives in New York with her husband and three children.

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:

Any inquiries on the podcast can be sent to [email protected]

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.

How does genetics influence individual responses to medications and what is pharmacogenomics? Jeri explains the significance of pharmacogenomic testing in personalizing medication management, highlighting its potential to improve patient outcomes and reduce adverse effects. Through real patient stories, the discussion emphasizes the importance of genetic information in prescribing practices and the challenges faced in integrating pharmacogenomics into routine healthcare. We talk about how pharmacogenomics can help in prescribing medications for pain, depression, and acid reflux as well as other conditions.

Key Takeaways:

As a pharmacogenomics expert, Jeri Nichols blends over two decades of experience as a pharmacist and genetic counselor to revolutionize personalized medicine. Jeri founded GenePharmer, LLC in 2021, a consulting practice that empowers patients with safer, more effective medication regimens, and often reduces reliance on unnecessary drugs. Throughout her career, her individualized approach, rooted in listening to patients and leveraging genetic insights, has improved countless lives across private practices, medical centers, genetics labs, and community pharmacies. A passionate educator, Jeri advances PGx through lectures for students and presentations at professional healthcare meetings. Jeri invites patients and providers to explore PGx at genepharmer.com, where she is cultivating better health, one genome at a time. You can also connect with GenePharmer on LinkedIn or Facebook.

genepharmer.com

facebook.com/GenePharmerLLC

linkedin.com/company/genepharmer-llc

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:

Any inquiries on the podcast can be sent to [email protected]

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.

It is a podcast crossover with It Happened to Me: A Rare Disease & Medical Challenges Podcast! It Happened to Me is also part of the Gene Pool Media Network

In this podcast, patient advocates Cathy Gildenhorn and Beth Glassman share their medical challenges living with rare diseases and are joined by fellow advocates and experts on the show.

For this episode, Beth Glassman interviews her co-host Cathy Gildenhorn about her rare disease, Wolfram Syndrome. 

Co-host Cathy Zacks Gildenhorn has devoted much of her life to improving the lives of others and connecting women to Jewish life and each other. She has served on several local, national and international boards. Cathy also served as presidential appointee to the United States Holocaust Memorial Council and worked on the opening of the museum. Currently, Cathy serves as editor in chief and designated spokesperson for the book, Redefining Moments: End of Life Stories for Better Living. Several years ago Cathy was diagnosed with a rare, genetic disease. Since then she has passionately dedicated her life to creating this supportive and inspiring podcast so that all in the medically challenged community know…You are Not Alone. 

On This Episode We Discuss:

Defining Wolfram Syndrome

Frequency of Wolfram Syndrome

Cathy’s Diagnostic Odyssey 

Symptoms of Wolfram Syndrome

Current Wolfram Syndrome Treatments

Research for Wolfram Syndrome 

Cathy’s prognosis 

Processing diagnosis

CRISPR potential treatment 

You can find other episodes of It Happened To Me! on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 

It Happened To Me is created and hosted by Cathy Gildenhorn and Beth Glassman. Steve Holsonback is our media engineer and co-producer. DNA Today’s Kira Dineen is our marketing lead and co-producer. Ashlyn Enokian is our graphic designer. 

About All Access DNA Podcast

Any inquiries on the podcast can be sent to [email protected]

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

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. 

Exploring Hereditary Cancer and the Making of "Love, Danielle". In this conversation, Devon Sidell and Amy Byer Shaneman discuss their new film, 'Love, Danielle' which explores the emotional and physical challenges faced by individuals with BRCA gene mutations. They share their personal stories, the impact of preventative surgeries, and the importance of genetic testing. The film aims to raise awareness and provide support for those navigating hereditary cancer risks, while also addressing family dynamics and the emotional weight of such decisions. The discussion highlights the need for better resources and education surrounding genetic testing and cancer prevention.

Key Takeaways:

ABOUT DEVIN SIDELL (Instagram: @devin.sidell)

In 2017, after receiving a positive BRCA 1 gene mutation diagnosis, actress and activist Devin Sidell decided to undergo a preventative double mastectomy and preventative hysterectomy/oophorectomy earning her the label of “previvor,” someone who has a predisposition to developing cancer but has not yet been diagnosed. Sidell, is BRCA-1 positive and underwent a preventative oophorectomy/hysterectomy in November 2016 while her older sister was undergoing chemotherapy for Triple-Negative, Stage 2B breast cancer. Sidell’s mother survived Stage 3C ovarian cancer in 1994 as well as breast cancer in 2012. Her mother’s sister passed away from ovarian cancer in 1996. In December 2017, Sidell opted to undergo a preventative double-mastectomy. Since her diagnosis, Devin has become a spokesperson for women taking fate into their own hands and encouraging them to partake in genetic testing. She is also a co-writer, star and executive producer of the first scripted feature film about the decisions an individual who carries the BRCA gene mutation must face.

ABOUT AMY BYER SHAINMAN (Instagram: @brcaresponder)

Amy Byer Shainman, also known as BRCA Responder, is an advocate, author, and producer providing support and education surrounding BRCA and other hereditary cancer syndromes. She is the executive producer of the award-winning documentary Pink & Blue: Colors of Hereditary Cancer and the new feature film about the decisions one has to face when diagnosis with BRCA gene mutation, Love Danielle. Shainman is a BRCA1 gene mutation carrier and "previvor. In 2010, she had two prophylactic surgeries to reduce her cancer risk drastically: a nipple-sparing, skin-sparing mastectomy with reconstruction and oophorectomy with a hysterectomy. Cure Magazine, The Jewish Journal, and The Palm Beach Post have featured Shainman's story. She has also appeared on numerous live and taped television and radio segments nationwide. As a digital ambassador for the National Society of Genetic Counselors gene pool, Shainman is considered one of fifteen influencers who have unique perspectives and knowledge in the fields of genetics and genetic counseling. She is an administrator for the largest female-only BRCA support group on social media. Shainman has published articles in The American Journal of Managed Care, Jupiter Magazine, and Oncology Nursing News. Shainman's medical memoir Resurrection Lily: The BRCA Gene, Hereditary Cancer & Lifesaving Whispers from the Grandmother I Never Knew has won over a dozen literary awards and was the December 2020 book club selection of The National Library of Medicine

ABOUT LOVE, DANIELLE (Instagram: @lovedanielle.film)

When Danielle, a happily married thirty-something, tests positive for a BRCA1 gene mutation, she learns that this puts her at a very high risk of developing breast and ovarian cancer. Her older sister Amy is already undergoing chemotherapy for a breast cancer diagnosis. Danielle now contemplates preemptively removing her "ticking time bomb" breasts and reproductive organs before cancer gets her, too. Her decision-making process involves flashbacks of her childhood with absent parents, bizarre anesthesia-induced dreams, and toxic confrontations with her recovering alcoholic mother and self-absorbed 70's TV Western star father. Ultimately, Danielle must figure out how to prioritize her health and well-being by putting herself first.

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:

Any inquiries on the podcast can be sent to [email protected]

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.

Considerations in genetic testing and IVF. In this conversation, Natalie Richeimer discusses the intricacies of pre-implantation genetic testing (PGT) as part of in vitro fertilization (IVF). She explains the different types of PGT, its accuracy, limitations, and the ethical considerations surrounding genetic testing. The financial burden of IVF and PGT is also addressed, highlighting the lack of insurance coverage and the high costs involved. Richeimer emphasizes the importance of genetic counseling in navigating these complex decisions and shares her personal experiences with IVF, underscoring the emotional impact on patients. The conversation concludes with a call to action for patients to seek genetic counseling and resources available through organizations like JScreen.

Key Takeaways:

Natalie Richeimer, MS, CGC, is a board certified genetic counselor at jscreen with clinical experience in adult, pediatric, and reproductive genetic counseling. She holds a master's degree in human genetics and genetic counseling from the Keck Graduate Institute. Natalie is a native Torontonian, who lives in Los Angeles with her husband and two boys. She has published research in the Journal of Genetic Counseling on the impact of orthodox Jewish clergy’s role in prenatal genetic counseling. Prior to her work as a genetic counselor, Natalie worked as a high school STEM teacher for 7 years in Los Angeles. She is passionate about reproductive health education and community engagement. Natalie has a special interest in outreach, with the goal of increasing awareness of and access to genetic counseling. Natalie has partnered with local organizations and high schools to provide community education.

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. Don’t forget to rate us as that helps more people, like you, find the show!

Here are more resources related to today’s topic:

Any questions, episode ideas, guest pitches, or comments can be sent to [email protected]

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!.