DNA Today: A Genetics Podcast

#347 Gender Affirming Cancer Genetic Counseling

To celebrate the end of Pride month, we are sharing this episode of the PhenoTips Speaker Series, which was hosted by our own, Kira Dineen. 
The current rise in structural hostility towards transgender and gender diverse individuals highlights the importance of appropriate and affirming care for this medically marginalized community. In cancer genetics, specific factors such as medical transition and psychosocial impacts alter the approach to, and requirements of, genetic counseling for trans patients. To support the unique needs of trans and gender diverse patients in hereditary cancer genetic counseling, this episode of the PhenoTips Speakers series features an international panel of cancer genetic counselors with advocacy and research specialties in inclusive genetic counseling practices for LGBTQ+ patients.
The PhenoTips Speaker Series is one of many podcasts in our 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 later 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 kira@genepoolmedia.com. I’d love to chat with you about the benefits of joining the network.
 
On This Episode We Discuss:
Risk considerations for trans and gender diverse cancer genetic counseling patients
Creating safe and inclusive environments in cancer genetic counseling
Protecting patients during times of unprecedented legislation
Resources and methods to support trans and gender diverse patients
 
The Panel: 
Kimberly Zayhowski, MS, CGC (she/her), is a genetic counselor, researcher, and assistant professor at Boston University Chobanian & Avedisian School of Medicine. She earned her Master’s in Human Genetics and Genetic Counseling from Stanford University School of Medicine and was one of the inaugural research fellows in the GC-FIRST program at the University of Minnesota. Her research focuses on LGBTQIA+ care, and specifically, the intersection of gender-affirming care and cancer genetics, with an emphasis on community-engaged research to improve clinical practices. Kim was awarded the Jane Engelberg Memorial Fellowship for her work in this area. She also serves on the Editorial Board for the Journal of Genetic Counseling as a Deputy Editor and a Director of Diversity, Equity, and Inclusion Integration. In recognition of her contributions to the field, she received the AGCPD Outstanding Clinical Supervisor Award in 2021 and the NSGC Leader in Cultural Advocacy Award in 2022.
 
Josephine Giblin (she/her/hers) is an NHS genetic counsellor working in Bristol, in the South West of England with an interest in barriers that LGBTQIA+ patients face in accessing genetics care. In the last few years, she has been particularly focused on trans and gender diverse patients with inherited cancer predisposition, leading a project to better equip genetics services to meet the needs of these patients. Recently Josephine worked with the UK Cancer Genetics Group to develop the first UK recommendations for the management of trans and gender diverse patients with inherited cancer risks.
 
Diane Koeller (she/her/hers) is a senior genetic counselor in the Division of Cancer Genetics and Prevention at Dana-Farber Cancer Institute in Boston, MA. She completed her MS in Genetic Counseling and MPH in Health Behavior and Health Education at the University of Michigan in Ann Arbor in 2016. She provides clinical genetic counseling for individuals and families with hereditary cancer risks. Diane collaborates on research studies in a variety of areas including hereditary lung cancer, LGBTQIA+ inclusive care, and genetic counseling and testing implementation in low resource settings. She is involved in education and advocacy focused on healthcare equity for transgender and gender diverse individuals. She is a co-founder and former co-chair of the Gender-Inclusive Subcommittee of the National Society of Genetic Counselors Cancer Special Interest Group.
 
Resources and further reading:
Navigating sexual orientation and gender identity data privacy concerns in United States genetics practices
NSGC Policy Statement: Distinguishing Sex and Gender to Reduce Harm
TGD CanScreen Project
Canadian Resource: Queering Cancer
CoppaFeel: UK patient resource with gender based language selection
PhenoTips for Cancer Genetics Tools: LGBTQIA+ inclusive tools for cancer genetics and genetic counseling
Book a PhenoTips One-on-One Meeting
 
Relevant DNA Today Episodes:
#190 PhenoTips: Gender Affirming Care in Genetic Counseling
#212 NSGC Recap 2022 (Amplify Sprouted for Gender Inclusive Cancer Genetic Counseling)
#213 Congenital Adrenal Hyperplasia and Gender with Sage Sargent
#243 PhenoTips: Navigating Barriers in LGBTQIA+ Genetic Care
#302 DNA Dialogues: Gender-Affirming Terminology and Hereditary Cancer Care
#344 Trans and Gender Diverse Patients' Experiences with Reproductive Healthcare
 
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 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 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 info@DNAtoday.com.

#346 Patient Experiences with Sickle Cell Experimental Treatments: The Triumphs & Trials

We’re kicking off Season 2 of #ThroughTheGenes with a powerful and personal episode in honor of World Sickle Cell Day, which was commemorated yesterday on June 19th.
 
This podcast isn’t just about science, it’s about storytelling through the lens of lived experience. Hosted by three uniquely different women who have experience with transformative therapies for sickle cell disease, this season celebrates the sisterhood they’ve built through vulnerability, advocacy, and the desire to push the conversation forward.
If you’ve been following along, you’ll remember Episodes #288 and #289 of DNA Today, where our host Kira Dineen sat down with Victoria Gray, the first person treated with CRISPR for her Sickle Cell Disease symptoms. Her story is one of remarkable resilience and groundbreaking science.
Then on Episode #305, she also spoke with the original co-hosts of #ThroughTheGenes, Wunmi Bakare and Dima Hendricks, two powerful patient advocates whose insight, honesty, and unwavering commitment have helped shape how we understand cell and gene-based therapies for sickle cell today.
This Season 2 opener sets the tone for what’s ahead. It’s a raw and reflective conversation that unpacks the triumphs and trials of transformative care, while shining a light on the emotional weight of medical decision-making. Through three distinct journeys, we find one undeniable truth: the power of shared experience can create bonds that feel like family, and fuel advocacy that moves scientific storytelling forward.
 
We’re also thrilled to share that #ThroughTheGenes is part of our new science podcast network: Gene Pool Media! We're building a home for engaging, credible, and diverse science storytelling. Check out our growing lineup of shows:DNA Dialogues
Demystifying Genetics
RealPharma
Beyond The Thesis with Papa PhD
It Happened To Me
All Access DNA
PhenoTips Speaker Series
...and two brand-new shows launching later this year!
If you host a science podcast and want to be part of a collaborative network that amplifies your voice, go to GenePoolMedia.com and click the “Apply” tab, or just shoot me an email at kira@genepoolmedia.com. We’d love to chat with you about what we’re building.
In this season 2 premiere of #ThroughTheGenes, hosts Wunmi Bakare, Dima Hendricks, and Christelle Salomon engage in a heartfelt discussion about their personal journeys with sickle cell disease and the transformative therapies they have explored. They share their motivations for seeking experimental treatments, the emotional and physical challenges they faced, and the importance of mental health and self-care. The conversation highlights the resilience of sickle cell warriors and the impact of their experiences on their identities. The episode concludes with a light-hearted quickfire round, reinforcing the bond among the speakers and their commitment to patient advocacy. 
 
Takeaways
Conversation kicks off with an authentic conversation about cell and gene-based therapies. 
Dima shares her journey with sickle cell and the challenges faced during her treatment.
Christelle discusses her motivations for exploring gene therapy and the impact on her life.
The importance of mental health and self-care is emphasized throughout the conversation.
Each speaker shares their unique experiences with transformative therapies, highlighting both triumphs and trials.
The discussion reveals the emotional and physical challenges faced during treatment processes.
The concept of freedom is explored as a central theme in navigating life with sickle cell disease.
The speakers reflect on their identities as sickle cell warriors and the ongoing journey of living with the condition.
The conversation addresses misconceptions about gene therapy and the realities of patient experiences.
The podcast concludes with a light-hearted quickfire round, reinforcing the bond among the speakers.
Subscribe to #ThroughTheGenes on Apple, Spotify, YouTube or wherever you listen to podcasts. Next episode of season 2 drops on July 3rd, 2025. 
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 info@DNAtoday.com.

#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 info@DNAtoday.com.

#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 kira@genepoolmedia.com. 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 DNADialoguesPodcast@gmail.com. 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 info@DNAtoday.com. 
 

#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 info@DNAtoday.com. 

#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 info@DNAtoday.com. 
 

#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 info@DNAtoday.com. 

#340 How Podcasting Shaped A Genetics Career: Dr. Matt Burgess Interviews Kira Dineen

I launched a brand new science podcast network called Gene Pool Media, two weeks ago on DNA Day, April 25th. The response has been amazing, so thank you to everyone who has been supportive, especially the podcasts that have joined the network including…
 
RealPharma
Beyond The Thesis with Papa PhD
DNA Dialogues
It Happened To Me
#ThroughTheGenes
Demystifying Genetics
PhenoTips Speaker Series 
All Access DNA
Two brand new shows debuting this year: one in the rare disease space and another exploring the intersection of health science, religion, and spirituality. 
 
Over the years we have shared episodes of DNA Dialogues, It Happened To Me and PhenoTips Speaker Series. And we had the hosts of #ThroughTheGenes and Demystifying Genetics on the show. And I’ve been a guest on RealPharma. So these are all podcasts that were already in our circle, it’s just more official now! 
 
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 kira@genepoolmedia.com. 
 
In this episode drop of Demystifying Genetics where I was actually a guest. This podcast is hosted by an Australian genetic counselor Dr. Matt Burgess. Matt interviews me about my journey as a high school starting this genetics podcast from my childhood bedroom to becoming a genetic counselor and now multi-award winning podcast. The conversation explores the nuances of genetic counseling, the impact of technology like CRISPR, and the unexpected connections that shape careers in genetics. Matt was also a guest way back in 2020 on Episode #114 on DNA Today when I was still a grad student. 
 
Episode Topics: 
 
Kira discusses her personal journey into genetic counseling 
Emphasises the balance between technical skills and patient care 
Addresses common misconceptions about the emotional weight of the profession 
Shares insights into the groundbreaking use of CRISPR technology 
Highlights the importance of podcasting in enhancing professional growth 
Explores the unexpected recognition from Kourtney Kardashian’s blog 
 
Any inquiries for Demystifying Genetics podcast can be through Matt’s LinkedIn. 
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 info@DNAtoday.com. 

#339 Inherited Leukemia: Exploring Genetic Risk and Early Detection

A week ago on DNA Day, April 25th, I launched a brand new science podcast network called Gene Pool Media. The response has been amazing, so thank you to everyone who has been supportive, especially the podcasts that have joined the network including…
RealPharma
Beyond The Thesis with Papa PhD
DNA Dialogues
It Happened To Me
#ThroughTheGenes
Demystifying Genetics
PhenoTips Speaker Series 
All Access DNA
Two brand new shows debuting this year: one in the rare disease space and another exploring the intersection of health science, religion, and spirituality. 
And All Access DNA, which you are about to hear one of their recent episodes. I figured that would be a perfect way to celebrate the launch of Gene Pool Media. 
 
Over the years we have shared episodes of DNA Dialogues, It Happened To Me and PhenoTips Speaker Series. And we had the hosts of #ThroughTheGenes and Demystifying Genetics on the show. And I’ve been a guest on RealPharma. So these are all podcasts that were already in our circle, it’s just more official now! 
 
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 kira@genepoolmedia.com. 
 
In this episode drop of All Access DNA you will hear from genetic counselor Sarah Bannon, who discusses the complexities of inherited blood cancers, particularly leukemia. The host of All Access DNA is Kate Wilson; who will sound familiar as she is a co-host on the journal of genetic counseling’s podcast, DNA Dialogues and a podcast from the National Society of Genetic Counselors. 
 
In this conversation, Sarah Bannon discusses the complexities of inherited blood cancers, particularly leukemia, and the evolving role of genetic counseling in understanding and managing these conditions. She highlights the historical context of genetic research in blood cancers, the importance of family history in assessing risk, and the advancements in genetic testing that have led to better identification of hereditary cancer syndromes. The conversation also covers the implications of genetic testing results for patients and their families, the challenges faced in the field, and the rewarding aspects of working in this emerging area of genetic counseling.
 
On This Episode We Discuss:
What inherited blood cancers are and how they may run in families
There are many known genes linked to hereditary blood cancers
How genetic testing can help monitor family members for early signs of cancer.
The role of clinical trials to explore preventative treatments for those at risk.
 
Sarah is a genetic counselor with over 14 years of experience in cancer genetics, specifically leukemia and lymphoma. She is a widely sought expert on hereditary predispositions to hematologic malignancy, which has been the focus of her clinical care and research. Sarah works as a genetic counselor at the National Institute of Allergy and Infectious Diseases (NIAID).
 
Here are more resources related to today’s topic, blood and bone marrow cancers:
National Marrow Donor Program and Be The Match
Leukemia and Lymphoma Society
Clinicaltrials.gov tracks all clinical trials available in the US
Team Telomere - A Community for Telomere Biology Disorders
RUNX1 Research Program
Findageneticcounselor.org to find a genetic counselor near you
 
Any inquiries for All Access DNA 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. 
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 info@DNAtoday.com.

#338 Social Determinants of Health and Mental Health in Urea Cycle Disorders

Urea cycle disorders (UCDs) are rare inborn errors of metabolism (IEMs) caused by enzyme or transporter deficiencies in the urea cycle, which is responsible for protein metabolism. These conditions can present at any age with acute, chronic, and intermittent symptoms of hyperammonemia. The first UCD was described over 50 years ago and while many “unknowns” about UCDs still remain, the way we think about and treat these conditions today is evolving.
In this second episode of a series focused on the evolution of UCD management, we discuss social determinants of health (SDOH) and how they impact patients with UCDs, examine the psychosocial burden of living with a chronic condition, and highlight how the multidisciplinary metabolic team can help patients and families overcome barriers to UCD management.
Kendra J. Bjoraker, PhD, LP, is a pediatric neuropsychologist who specializes in rare genetic conditions. She served as faculty at the University of Minnesota and Children’s Hospital Colorado/University of Colorado and operates a dedicated practice, Bjoraker Neuropsychology Consultants, PLLC. Dr Bjoraker’s mission is to help identify and address psychosocial issues in patients with rare disorders in order to alleviate stressors associated with living with chronic conditions.
Erika R. Vucko, APRN-NP, FNP, is a metabolic nurse practitioner at Ann & Robert H. Lurie Children’s Hospital of Chicago and faculty at the Northwestern University Feinberg School of Medicine. She is also the PKU Clinic Director at Lurie Children’s, co-created APRN metabolic follow-up clinic for patients with IEMs, and acts as a principal investigator for multiple clinical trials. She has provided clinical care for many patients with UCDs, among other genetic conditions. Her clinical interests include metabolic research, newborn screening, and lysosomal storage disorders.
On This Episode, We Discuss:
How socioeconomic and psychosocial factors impact a patient’s ability to engage in their UCD management
Best practices and opportunities for multidisciplinary metabolic clinicians to support the care of patients with UCDs and their families
Available resources to help patients navigate SDOH and mental health barriers to UCD management
Related Episodes:
Episode #323: Supporting Ongoing Urea Cycle Disorder (UCD) CareA discussion about how clinicians can better engage patients in their own care to help them sustain their daily UCD management needs
  Episode #282: The Evolution of Caring for Females With OTC DeficiencyA conversation about ornithine transcarbamylase (OTC) deficiency, the most commonUCD, and how care for symptomatic heterozygous females has evolved over time
 
Get ready, genetic nerds—another brand-new episode of DNA Today drops this Friday! Youcan 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 VideoLead 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. This episode issponsored by AMGEN.
 
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 info@DNAtoday.com.
 
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