DNA Today: A Genetics Podcast

• #345 How To Talk About DNA Without Losing People: Strategies Part 1

  The co-founders of The Science Underground join our host Kira Dineen for an in-person episode to discuss the importance of effective science communication in genetics and approaches to achieve this.  The Science Underground was founded by former NIH’s National Human Genome Research Institute communicators Jenny Montooth, Sarah Alex Bates, and Britny Kish.    Topics Discussed: Strategies for making complex genetics concepts accessible to the public The role of humor, memes, and social media in building engagement and trust Challenges of communicating abstract genetic topics and foundational genomics knowledge Reflections on progress in public genomic literacy since the Human Genome Project Disparities in genetics understanding across different socioeconomic and educational backgrounds The critical role of storytelling in science communication Using creative media to preemptively address misconceptions Building public trust in genetics by acknowledging historical injustices and systemic biases Importance of transparency, community collaboration, and ethical considerations in genomic research Engaging underrepresented and Indigenous communities in genetic research conversations Evolving role of research participants: from subjects to true partners in science Cultural sensitivity around ancestral DNA and the emotional weight it carries The misconception that complex science can't be simplified for broader audiences Practical advice for scientists: use analogies, creativity, and empathy to communicate effectively   The Panel:   Alex Bates is a science communications expert with 20 years of experience leading national, metric-driven campaigns across government, nonprofit, and startup sectors. She is co-founder of The Science Underground, LLC, which crafts culturally competent, science-backed communications for early-stage startups and major consortia. Most recently, she served as Communications Director at the National Human Genome Research Institute (NHGRI), where she led award-winning outreach on topics like the history of eugenics and helped establish NHGRI’s global reputation for innovative public engagement—work that ended with the April 1 HHS layoffs. Alex previously led communications for the National Science Foundation’s Engineering Directorate and BRAIN Initiative, earning Director’s Awards for both Excellence Pioneer and Diversity and Inclusion, and managed BrainFacts.org, a $1.2M science education initiative. She holds master’s degrees in journalism and astronomy, and a bachelor’s degree in physics and English.   Jenny Montooth is a science communications professional with a decade of experience making complex research engaging and accessible through innovative, culturally relevant strategies. She holds a master’s degree in public history from the University of Maryland, Baltimore County, where she developed a passion for translating scholarship for broader audiences. As co-founder of The Science Underground, LLC, and former Lead Public Affairs Specialist at the National Human Genome Research Institute, Jenny has led nationally recognized outreach campaigns—including on the first complete human genome sequence- and earned multiple awards for her dynamic use of social media to bring science into the public conversation.   Britny Kish is co-founder of The Science Underground, leading administrative and financial operations to support the development of culturally aware, results-driven communications strategies for scientific organizations. Most recently, she served as Deputy Director of Communications at the National Human Genome Research Institute (NHGRI), where she oversaw operations, budgeting, and campaign implementation, and played a key role in advancing equitable science communication and digital outreach. With over 15 years of experience in healthcare administration and communications, Britny specializes in program management, team leadership, and strategic communications, with additional expertise in virtual and exhibit event planning and management within the biomedical research space.   Resources/Links Mentioned: Kira Dineen’s Invited NIH Talk: “Mastering the Mic: Interview Strategies for Science Communicators” “Public Knowledge of and Attitudes Toward Genetics and Genetic Testing” in Genetic Testing and Molecular Biomarkers  Telomere-to-Telomere (T2T) The Star Wars meme that started it about clarifying T2T  NHGRI symposium confronts difficult pasts of eugenics and scientific racism Dorothy Roberts’ Books  Informing the Navajo Public about Genetic Research and Policy “Weaving the Strands of Life (Iiná Bitł’ool): History of Genetic Research Involving Navajo People” in Human Biology  NHGRI’s Human Genome Fact Sheet  “Haunting the Human Genome Project: A Question of Consent” in Undark Magazine “The Immortal Life of Henrietta Lacks” By Rebecca Skloot  The Tuskegee Syphilis Study   NIH’s Tribal Health Research Office  BRAT Summer Meme aka Bring RNA Attention Today   DNA Today Referenced/Relevant Episodes:  #34 Henrietta Lacks Relatives Interviewed About Their Grandmother’s Cells’ Impact #182 Eric Green on the Complete Human Genome Project #183 Dr. Miga and Dr. Phillippy on the Telomere to Telomere (T2T) Consortium #214 2022 Genetics Wrapped with Eric Green #260 PhenoTips: Population Genomics in Clinical Practice (with Dr. Eric Green)  #266 Genetics Wrapped 2023 with Dr. Eric Green #287 Familial Hypercholesterolemia with Jess and NIH’s Julie Sapp #306 NIH’s Dr. Francis Collins’ Leadership in the Human Genome Project and COVID-19 #318 Genetics Wrapped 2024: Top Advances in Genomic Medicine (with Dr. Eric Green)   Most importantly check out The Science Underground! If you have genetics research or a project you are trying to inform people about Britny, Jenny and Alex are THE people to work with. They have already been helping us out at DNA Today and our new podcast network, Gene Pool Media.  Get ready, genetic nerds—another brand-new episode of DNA Today drops next Friday! You can always count on us to deliver fresh content every Friday.  While you wait, why not dive into our library of over 340 episodes? Binge them all on Apple Podcasts, Spotify, our website, or wherever you love to listen—just search “DNA Today.” Prefer watching? We’ve got you covered! For the past four years, we’ve been recording episodes with video, including some filmed at the iconic NBC Universal Stamford Studios. Check them out on our YouTube channel!  DNA Today is hosted and produced by Kira Dineen, MS, LCGC, CG(ASCP)CM . Our Video Lead is Amanda Andreoli. Our Social Media Lead is Liv Davidson. And our logo Graphic Designer is Ashlyn Enokian, MS, CGC.  See what else we are up to on Instagram, X (Twitter), BluSky, Threads, LinkedIn, Facebook, YouTube and our website, DNAToday.com. Questions/inquiries can be sent to [email protected].

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• #344 Trans and Gender Diverse Patients' Experiences with Reproductive Healthcare

  We wanted to let you know of a live podcast episode of the PhenoTips Speakers Series happening soon on June 18th, 2025 at 12pmEST. We do an annual pride installment, this year we are exploring Gender Affirming Cancer Genetic Counseling. Sign up here so you can tune in and ask your questions live to host Kira Dineen and the impressive panel we have lined up.   Have you heard? I launched a brand new science podcast network called Gene Pool Media. Thanks to everyone who has supported the network by following us @GenePoolMedia on social. Shoutout to the podcasts in our network, you should check them out! RealPharma Beyond The Thesis with Papa PhD DNA Dialogues It Happened To Me All Access DNA #ThroughTheGenes Demystifying Genetics PhenoTips Speaker Series  Two brand new shows debuting this year    If you have a science podcast and are interested in joining the network, go to GenePoolMedia.com and click the “Apply” tab at the top right. Or just email me directly at [email protected]. I’d love to chat with you about the benefits of joining the network.   Here and there we have been sharing episodes from other podcasts in the Gene Pool Media network. This week we are sharing a segment from a recent episode (#15) of DNA Dialogues, which is the official podcast of the Journal of Genetic Counseling. Our host Kira Dineen, was lucky enough to be on the team that launched the show last year. Here’s what is unique about this show, each episode of this podcast two papers from the journal are highlighted through interviews with the authors themselves. We picked this segment to share in honor of Pride month as it explores the paper “Transgender and gender diverse patients' experiences with pregnancy-related genetics discussions: A qualitative study”.    The two authors of the study join for this interview: Jaime Schechner and Darius Haghighat.    Jaime Schechner (she/her) works as a neurology genetic counselor at Boston Children’s Hospital. She completed her Master of Science in Genetic Counseling at Boston University, and previously worked as a genetic counseling assistant at Beth Israel’s Maternal Fetal Medicine Center.   Darius Haghighat (he/him) is a reproductive genetic counselor at Boston Medical Center and an Assistant Professor of Obstetrics and Gynecology at Boston University Chobanian & Avedisian School of Medicine. He has prior experience as a cancer genetic counselor as well. He completed his Master's in Genetic Counseling at Boston University. As a queer genetic counselor he is especially passionate about LGBTQIA+ health equity.   In this segment Kate, Darius, and Jaime discuss: - The inspiration behind focusing the study on pregnancy-related genetic counseling experiences among trans and gender diverse (TGD) individuals. - Major gaps in reproductive healthcare for TGD patients, including misgendering, binary language, and lack of provider knowledge. - Participant stories about feeling unseen or misgendered, and discussed the emotional impact of these encounters. - Frustrations with terms like "maternal" and "advanced maternal age," and suggested inclusive alternatives for clinical language. - Moments of affirming care, showing how small gestures can have a powerful impact across the healthcare journey. - The need for systemic change, including inclusive policies, provider education, and future research that centers TGD voices.   Would you like to nominate a JoGC article to be featured in the show? If so, please fill out this nomination submission form here. Multiple entries are encouraged including articles where you, your colleagues, or your friends are authors.   Be sure to check out other episodes of DNA Dialogues by searching “DNA Dialogues” in your favorite podcast app or here. Check out the Journal of Genetic Counseling here for articles featured in this episode and others.  Any questions, episode ideas, guest pitches, or comments can be sent into [email protected]. DNA Dialogues’ team includes Jehannine Austin, Naomi Wagner, Khalida Liaquat, Kate Wilson and our own, Kira Dineen. Our logo was designed by Ashlyn Enokian.  Get ready, genetic nerds—another brand-new episode of DNA Today drops this Friday! You can always count on us to deliver fresh content every Friday.  While you wait, why not dive into our library of over 300 episodes? Binge them all on Apple Podcasts, Spotify, our website, or wherever you love to listen—just search “DNA Today.” Prefer watching? We’ve got you covered! For the past four years, we’ve been recording episodes with video, including some filmed at the iconic NBC Universal Stamford Studios. Check them out on our YouTube channel!  DNA Today is hosted and produced by Kira Dineen, MS, LCGC, CG(ASCP)CM . Our Video Lead is Amanda Andreoli. Our Social Media Lead is Kajal Patel. Our Outreach Intern is Liv Davidson. And our logo Graphic Designer is Ashlyn Enokian, MS, CGC.  See what else we are up to on Instagram, X (Twitter), BluSky, Threads, LinkedIn, Facebook, YouTube and our website, DNAToday.com. Questions/inquiries can be sent to [email protected].   

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• #343 The First Child to Receive CRISPR for Duchenne? A Father’s Fight for a Cure

  What would you do if your child was diagnosed with a terminal genetic condition, and the only hope for survival required raising $2.2 million?   In this deeply moving episode of DNA Today, we’re joined by Joe Jackson, a rare disease advocate and father of 7-year-old William, who lives with Duchenne Muscular Dystrophy (DMD), a rare, progressive genetic disorder that leads to muscle degeneration and shortened life expectancy.   But William’s story stands apart. Due to a rare duplication mutation in the DMD gene, existing treatments aren’t an option. So Joe and his wife Kati are doing something extraordinary: working with Cure Rare Disease to develop a personalized CRISPR gene-editing therapy that could become the first of its kind in the United States; and possibly save William’s life.   In this conversation, Joe opens up about the emotional toll of a devastating diagnosis, the scientific promise of genome editing, and the urgent, grassroots efforts it takes to fund a first-in-human therapy when time is running out. Episode Topics Include: What it’s like to receive a diagnosis of Duchenne Muscular Dystrophy How William’s rare mutation excludes him from all existing treatments The role of Cure Rare Disease in accelerating gene therapy development How CRISPR could eliminate William’s genetic duplication The emotional moment Joe saw rodent models with William’s mutation fully recover after CRISPR Why personalized gene therapies like this one can cost $2.2 million+ What comes next once the fundraising goal is met The ripple effect: how William’s treatment could pave the way for other forms of DMD How Joe raised awareness by rowing 157 miles of the Rogue River in just 24 hours What the recent breakthroughs in personalized CRISPR therapies mean for the future of rare disease   Resources: At the beginning of the episode, the Host Kira Dineen couldn’t remember what percentage of cases of DMD are random/de novo, it’s 33% according to this study. Two DNA Today episodes were referenced: #156 Rich Horgan on Duchenne Muscular Dystrophy (Cure Rare Diseases Founder) #342 $10 Million for a Cure: Donating Mr. Beast’s “Beast Games” Winnings For Son’s Creatine Transporter Deficiency Towards the end of the interview Joe mentioned a brand new 8-minute video sharing about the “We Row For William” adventure, watch it here. About the Guest: Joe Jackson is a father, rare disease advocate, and fundraiser whose youngest son, William, is battling Duchenne Muscular Dystrophy. With support from Cure Rare Disease, Joe and his wife are working to develop a custom CRISPR-based gene editing therapy tailored to William’s exact mutation. His story was recently featured on CNN’s website and Instagram here. Joe continues to inspire families around the world with his passion, creativity, and determination to save his son’s life. How You Can Help: To support William’s custom gene therapy and learn more about Duchenne visit WeWillForWilliam.org. Every donation brings William one step closer to a groundbreaking treatment, and helps advance the future of genetic medicine. Connect With Us: Get ready, genetic nerds—another brand-new episode of DNA Today drops this Friday! You can always count on us to deliver fresh content every Friday.  While you wait, why not dive into our library of over 300 episodes? Binge them all on Apple Podcasts, Spotify, our website, or wherever you love to listen—just search “DNA Today.” Prefer watching? We’ve got you covered! For the past four years, we’ve been recording episodes with video, including some filmed at the iconic NBC Universal Stamford Studios. Check them out on our YouTube channel!  DNA Today is hosted and produced by Kira Dineen, MS, LCGC, CG(ASCP)CM . Our Video Lead is Amanda Andreoli. Our Social Media Lead is Kajal Patel. Our Outreach Intern is Liv Davidson. And our logo Graphic Designer is Ashlyn Enokian, MS, CGC.  See what else we are up to on Instagram, X (Twitter), BluSky, Threads, LinkedIn, Facebook, YouTube and our website, DNAToday.com. Questions/inquiries can be sent to [email protected]. 

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• #342 $10 Million for a Cure: Donating Mr. Beast’s “Beast Games” Winnings For Son’s Creatine Transporter Deficiency

  What would you do if you won $10 million?  For Jeff and Jennifer Allen, the answer was simple: fund research to find a cure for their son’s rare genetic condition.  In this episode of DNA Today, we’re joined by Jeff and Jen Allen; Jeff is known to over 100 million YouTube viewers as Player 831, the winner of MrBeast’s high-stakes reality series Beast Games—and the recipient of the largest game show prize in history: $10 MILLION. Alongside him is his wife, Jennifer Allen, who has been an equal partner in their advocacy journey every step of the way.  But the Allens aren’t spending that money on luxury vacations or dream homes. Their mission is far bigger—and far more urgent. Their youngest son, Lucas, lives with Creatine Transporter Deficiency (CTD), a rare and devastating genetic disorder that impairs brain and muscle function. With fewer than 400 known cases worldwide and no approved treatments, CTD is under-recognized and underfunded. Jeff applied to Beast Games with one goal: raise awareness and secure funding to accelerate research. Against all odds, he won—and now, he and Jen are investing in the future of CTD research and other families like theirs. In this episode, Jeff and Jen share their incredible journey—from the intensity of Beast Games to the emotional impact of Lucas’s diagnosis, and how they’re using their platform and prize money to drive life-changing research.  Episode Topics Include: Behind-the-scenes stories from Jeff’s experience on Beast Games Jen’s perspective watching Jeff compete and staying grounded in their family’s mission What it was like for their son Jack to visit Jeff during filming and serve as his “coach” Why Jeff turned down offers of $1 million+ to stay in the game The emotional moment Jeff dedicated his final win to Lucas What Creatine Transporter Deficiency (CTD) is and how it affects Lucas The current research status and the massive funding gap for CTD How the Allens plan to use the $10 million prize to support research and gene therapy development Hope on the horizon: breaking news of the personalized CRISPR therapy and what this could mean for CTD The couple’s involvement with the Association for Creatine Deficiencies and broader advocacy work Advice for newly diagnosed families navigating rare diseases like CTD About the Guests: Jeffrey Randall Allen, known as Player 831, made history as the winner of the inaugural season of Beast Games, the high-stakes reality competition series created by YouTube sensation MrBeast (Jimmy Donaldson). In the show's dramatic finale, Allen secured a record-breaking $10 million prize—the largest in game show history—by correctly selecting the winning briefcase in a tense final game of chance .   His advocacy efforts are deeply personal. Allen's youngest son, Lucas, was diagnosed with Creatine Transporter Deficiency (CTD), a rare genetic disorder affecting brain and muscle function.  With less than 400 cases diagnosed world wide, CTD has no known treatment, prompting Allen to raise awareness and fund research through his involvement with the Association for Creatine Deficiencies.   Allen applied to Beast Games with the primary goal of using the platform to raise awareness for CTD. Despite offers of up to $1 million to leave the competition early, he remained steadfast, ultimately winning the $10 million prize. He plans to use the funds to support clinical trials and research aimed at finding a treatment for CTD, which is estimated to require between $30 million and $40 million to develop.    Allen resides in the Bay Area with his wife, Jennifer, and their two sons, Jack and Lucas. Through his historic win on Beast Games, Jeffrey Randall Allen has not only changed his family’s life but also brought global attention to the fight against rare diseases—turning a personal struggle into a powerful mission for change.    Resources: Andrew Huberman on Creatine  “Single dose creatine improves cognitive performance and induces changes in cerebral high energy phosphates during sleep deprivation.” Article that Jeff references from Scientific Reports.  Breaking news of the personalized CRISPR therapy in the New York Times.  “A programmable dual-RNA-guided DNA endonuclease in adaptive bacterial immunity”. Landmark 2012 paper in Science about CRISPR that Kira references.  FDA Approves First Gene Therapies to Treat Patients with Sickle Cell Disease Association for Creatine Deficiencies Watch the Beast Games on Amazon Prime    Connect:   Follow Jeff on TikTok @legacy.831, Instagram @legacy.831, YouTube @legacy831official, and LinkedIn here.    Contact the Allen’s public relation agent Natalie Beita at Element 23, her email is natalie (at) element23.co.  Get ready, genetic nerds—another brand-new episode of DNA Today drops this Friday! You can always count on us to deliver fresh content every Friday.  While you wait, why not dive into our library of over 300 episodes? Binge them all on Apple Podcasts, Spotify, our website, or wherever you love to listen—just search “DNA Today.” Prefer watching? We’ve got you covered! For the past four years, we’ve been recording episodes with video, including some filmed at the iconic NBC Universal Stamford Studios. Check them out on our YouTube channel!  DNA Today is hosted and produced by Kira Dineen, MS, LCGC, CG(ASCP)CM . Our Video Lead is Amanda Andreoli. Our Social Media Lead is Kajal Patel. Our Outreach Intern is Liv Davidson. And our logo Graphic Designer is Ashlyn Enokian, MS, CGC.    See what else we are up to on Instagram, X (Twitter), BluSky, Threads, LinkedIn, Facebook, YouTube and our website, DNAToday.com. Questions/inquiries can be sent to [email protected].   

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• #341 How One Family Faced Seven ALS Diagnoses and Chose Advocacy

  In honor of ALS awareness month, we are joined by Debbie Lower. She is a remarkable advocate, educator, and caregiver whose family has been deeply impacted by ALS. Over the last three decades, Debbie has lost seven family members to ALS and frontotemporal dementia (FTD), many of whom carried the C9orf72 gene mutation. From caregiving for her mother to mentoring other families and advocating for research funding, Debbie has turned unimaginable loss into powerful action. Today we’ll dive into the genetics of ALS, the current landscape of research and drug development, and how Debbie continues to support families navigating the emotional and genetic complexities of this disease.   Episode Topics Include: How ALS and FTD unfolded in Debbie’s family over multiple generations The impact of receiving a negative genetic test result for C9orf72 What the C9orf72 repeat expansion means for familial ALS and FTD Other genes linked to ALS and how genetic testing is evolving The emotional and psychological complexities of genetic diagnoses The difference between familial and sporadic ALS Promising clinical trials and research efforts in genetic ALS How advocacy and mentorship empower families facing these rare diseases Debbie’s advice for newly diagnosed families navigating ALS or FTD   Resources Mentioned in Episode:  I Am ALS Organization  The ALL ALS PREVENT Study  The ALL ALS ASSESS Study  HEALEY ALS Platform Trial End The Legacy Organization   Team Gleason Foundation (specifically their tech like controlling wheelchairs with eye gaze) I'm Dying To Tell You Podcast  Go On, Be Brave Documentary  Tofersen drug reversing some people’s symptoms (In 2023 the FDA approved it to treat SOD1-ALS)  “Artificial intelligence empowered voice generation for amyotrophic lateral sclerosis patients” Regondi et. al 2025 Nature Paper “Evidence-based consensus guidelines for ALS genetic testing and counseling” Roggenbuck et. al 2023, Annals of Clinical and Translational Neurology Paper “Guidance for clinical management of pathogenic variant carriers at elevated genetic risk for ALS/FTD” Benatar et. al. 2025, J Neurol Neurosurg Psychiatry Paper    At the end of the episode, host Kira Dineen has a heartfelt thank you to one of her mentors who has ALS, Doug Campbell. He has been and continues to be instrumental in the development of the DNA Today brand and business.  Get ready, genetic nerds—another brand-new episode of DNA Today drops this Friday! You can always count on us to deliver fresh content every Friday.  While you wait, why not dive into our library of over 300 episodes? Binge them all on Apple Podcasts, Spotify, our website, or wherever you love to listen—just search “DNA Today.” Prefer watching? We’ve got you covered! For the past four years, we’ve been recording episodes with video, including some filmed at the iconic NBC Universal Stamford Studios. Check them out on our YouTube channel!  DNA Today is hosted and produced by Kira Dineen, MS, LCGC, CG(ASCP)CM . Our Video Lead is Amanda Andreoli. Our Social Media Lead is Kajal Patel. Our Outreach Intern is Liv Davidson. And our logo Graphic Designer is Ashlyn Enokian, MS, CGC.    See what else we are up to on Instagram, X (Twitter), BluSky, Threads, LinkedIn, Facebook, YouTube and our website, DNAToday.com. Questions/inquiries can be sent to [email protected]. 

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