All Access DNA

Flexibility, pain, and fatigue are part of hypermobility EDS. In this conversation, Dr. Taylor Kerrins discusses Ehlers-Danlos Syndrome (EDS), particularly hypermobile EDS, covering its definition, symptoms, diagnosis, and management strategies. He shares personal experiences with the condition, the challenges of obtaining a diagnosis, and the importance of physical therapy and exercise. The discussion also touches on genetic testing and available support resources for patients. Taylor emphasizes the need for ongoing research and understanding of EDS, highlighting the complexities of the condition and the importance of community support.   Key Takeaways: EDS is a connective tissue disease with various types. Joint dislocations are common in individuals with hypermobile EDS. There is no specific genetic test for hypermobile EDS. Exercise is extremely helpful but must be tailored to the individual.. Support groups provide valuable resources and community for EDS patients. Ongoing research is essential for understanding EDS better.   Dr. Taylor Kerrins is a Clinical Assistant Professor of Medical Genetics & Genomics at the Medical University of South Carolina.   Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com   Here are more resources related to today’s topic: The Ehlers Danlos Society Information on hEDS from the Marfan Society American Academy of Family Physicians handout from 2021 The Norris Lab at MUSC   Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com   Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.   The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. Our Social Media Lead is Casey Lepley.  

Pediatric cancer and genetic testing. In this conversation, Sarah Scollon discusses the complexities of childhood cancer, particularly the genetic factors that may contribute to its development. She explains the differences between tumor and germline testing, the importance of identifying children at risk for hereditary cancer syndromes, and the evolving guidelines for genetic testing in pediatric oncology. The discussion also touches on the psychosocial aspects of genetic counseling, informed consent, and the implications of genetic testing for families. Sarah emphasizes the need for ongoing research and the importance of communication with families about genetic risks and testing options.   Key Takeaways: About 8 to 18 percent of kids with cancer have genetic mutations. Tumor testing focuses on mutations in the tumor itself. Germline testing looks at inherited genetic changes. Genetic testing can lead to tailored surveillance plans. Informed consent is crucial in genetic testing discussions. Cascade testing can benefit family members of affected children. The landscape of genetic testing is rapidly evolving. Access to care and psychosocial support are vital for families. Sarah Scollon is an Assistant Professor in the Department of Pediatrics at Baylor College of Medicine (BCM) and lead genetic counselor for the Texas Children’s Cancer and Genomics Program. She has served in dual clinical and research roles across the course of her career. Ms. Scollon has had a longstanding dedication to the care of children and families affected by cancer. She is an advocate for the incorporation of genetic counseling into pediatric cancer care. She works to educate others on the role genomics and precision oncology can play in the care of patients with pediatric cancer and their families both from a clinical and psychosocial standpoint. Her research interests engage the overarching themes of (1) pediatric cancer predisposition and precision oncology (2) optimization of patient-provider communication and education and (3) adaptation of genetic counseling practice for implementation of evolving technologies for care of pediatric cancer patients. Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com   Here are more resources related to today’s topic: Sarah Scollon’s Contact Info and Published Papers Findageneticcounselor.org to search for a genetic counselor near you Pediatric Oncology Series- includes recommendations American Association for Cancer Research- Childhood Cancer Awareness page   Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com   Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. Our Social Media Lead is Casey Lepley.

Navigating child heart failure and mitochondrial disease. Dr. Heather Gatcombe shares her personal journey as a physician and mother navigating the complexities of mitochondrial disease and heart failure in her son. She discusses the challenges of diagnosis, the emotional toll of medical crises, and the journey through heart transplant. Dr. Gatcombe emphasizes the importance of understanding mitochondrial disease, the role of advocacy, and the potential future of mitochondrial medicine, including the impact of new treatments and the need for continued support and awareness.   Key Takeaways: Mitochondrial disease can be difficult to diagnose due to its varied presentation. Heart failure in children can arise from mitochondrial dysfunction. Transplantation is a complex process that requires a multidisciplinary approach. Post-transplant care involves managing potential complications and medication side effects. Advocacy is crucial for rare diseases to ensure access to necessary treatments. New medications can significantly improve the quality of life for patients with mitochondrial disease. And one of these medications is at risk of being discontinued meaning more people going back on the heart transplant list.   Dr. Heather Gatcombe is the mother of a child with mitochondrial disease and is on the Board of Trustees of the United Mitochondrial Disease Foundation and the Board of Directors of Enduring Hearts. She is an assistant professor at Emory University School of Medicine. The views expressed here are her own and do not represent those of Emory University. https://www.linkedin.com/in/heather-gatcombe-md-3891875/ https://www.instagram.com/heathergatcombe/   Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com   Here are more resources related to today’s topic: Join the fight for Elamipretide and ask FDA to approve now! United Mitochondrial Disease Foundation Mito Action- a patient advocacy group MitoCanada Mito Foundation in Australia Transplant Families- resources and support for families navigating pediatric transplantation Enduring Hearts   Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com   Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.   The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. Our Social Media Lead is Casey Lepley.  

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: The journey of receiving a diagnosis involves complex grief. Community support is vital for families with children who are neurodivergent  The DAND Alliance aims to raise awareness and promote research. Awareness and education can change lives for families. Trusting your instincts can be important in advocating for your child.   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. Learn More About DAND + Donate: www.thedandalliance.org Follow The DAND Alliance on Instagram: @thedandalliance Read The Atypical Advocate: theatypicaladvocate.substack.com Follow The Atypical Advocate on Instagram: @theatypicaladvocate   Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com   Here are more resources related to today’s topic: The Atypical Advocate, Jacalyn’s Substack The DAND Alliance Simons Searchlight Findageneticcounselor.org to search for a genetic counselor near you Episode 27- Is autism genetic?   Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com   Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.   The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. Our Social Media Lead is Casey Lepley.

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: Pharmacogenomics is the study of how genetics affect medication response. Genetic testing can lead to more effective and safer medication prescriptions. Genetic information can help avoid severe side effects from medications. Pharmacogenomic testing can reduce the trial-and-error approach in medication management. Pharmacogenomics has the potential to save lives and healthcare costs. The future of pharmacogenomics looks promising but faces integration challenges.   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: Findageneticcounselor.org to search for a genetic counselor near you CPIC guidelines Episode 16, Cancer & Chemo: Could DPYD testing save lives? Jeri’s company, GenePharmer, LLC   Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com   Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.   The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. Our Social Media Lead is Casey Lepley.

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 AllAccessDNA@gmail.com 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: The film, Love, Danielle, portrays the emotional and physical challenges of previvors. Post-surgery realities include ongoing medical check-ups and hormone changes The film aims to entertain while educating about BRCA mutations. Family dynamics play an important role in the decision-making process. Genetic testing can be life-changing for families at risk. Healthcare providers need to communicate sensitively about genetic results. Love, Danielle is a pioneering narrative on hereditary cancer.   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: Love, Danielle website and trailer Devin Sidell’s website Resurrection Lily by Amy Byer Shainman Facing Our Risk of Cancer Empowered- a nonprofit for individuals facing hereditary cancer The Lynne Cohen Foundation for women facing increased risk of breast and ovarian cancers His Breast Cancer Awareness- male breast cancer support organization Bright Pink Male Awareness Foundation Findageneticcounselor.org to search for a genetic counselor near you   Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com   Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.   The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. 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: PGT is part of the IVF process PGT is a screening test, not a diagnostic test The accuracy of PGT results can vary Genetic counseling is available for patients undergoing IVF Ethical considerations are complex Patients often face emotional and financial challenges during IVF and PGT   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: Find a Genetic Counselor American Society for Reproductive Medicine or ASRM American College of Obstetricians and Gynecologists (ACOG) Committee Opinion on Pre-implantation Genetic Testing Episode 20- How does music tell the story of genetic hearing loss? With Matt Hay Episode 5- Do I need prenatal genetic screening? With Blair Stevens   Any questions, episode ideas, guest pitches, or comments can be sent to AllAccessDNA@gmail.com   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!.

Hey hey DNA! We are celebrating our first season by being nominated for the Podcast Awards! Please help us win the title as Best Health Podcast. Just head over to podcastawards.com and click the blue button that says “Signup to Vote Now” and fill out your info. Then a CRUCIAL step is to check off the box that says “Please consider me as one of the listeners that will be randomly selected to vote on the final slate in August”. This means you, our listener, will get to vote in the final round of voting! Once you fill out this info, you will be taken directly to the nominations page. Scroll down to the “Heath” category and select All Access DNA. Then hit save nominations at the bottom of the page. You will have an email asking you to confirm your email address to try to reduce bot votes. So please confirm and that’s it! I am so thankful for everyone who has listened and checked out the All Access DNA podcast. We are a very small and independent podcast so it means the world to me that you take the time and vote for us in the People’s Choice podcast awards. Additionally, we are on a break for July so we can gear up for August with new episodes, new updates, and new experts in genetic medicine. Stay subscribed so you don’t miss the next season. And take a moment to go to podcastawards.com , fill out your info and select All Access DNA in the Health category. It just takes 30 seconds! And thank you, thank you for listening!

In this conversation, Dr. Chaya Murali discusses the importance of understanding autism, the role of genetic testing, and the impact of misinformation surrounding vaccines and autism. She emphasizes the need for families to seek reliable resources and support while navigating the complexities of neurodivergence. The conversation also highlights the emotional aspects of parenting children with autism and the importance of empathy in medical practice.   Key Takeaways: Many genetic conditions can co-occur with autism, highlighting the need for genetic evaluations. Autism is partially genetic, but environmental factors also play a role. Current genetic testing can identify a known genetic cause in about 30% of autism cases. The rise in autism diagnoses may be due to better awareness and changes in diagnostic criteria. Boys are diagnosed with autism more frequently than girls, but this may change as awareness grows. Genetic testing for autism is not predictive or diagnostic. Misinformation about vaccines continues to circulate despite evidence showing that vaccines do not cause autism   Dr. Chaya Murali is a pediatric geneticist and personal essayist in Houston, TX. Her clinical focus includes general genetics and skeletal dysplasias, and her research focus includes quality of life and lived experiences among people with rare disease and their families. She has cultivated a special interest in science communication, particularly around the genetics of autism in particular and human genetics in general. Dr. Murali's personal essays can be found at www.chayanautiyalmurali.com, and she can be found occasionally Instagramming @AkkasHouse   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: “Handing the pen to the patient: Reflective writing for children and families affected by genetic conditions” by Chaya Murali, Susan D Fernbach, Lorraine Potocki SPARK for Autism Research Autism Foundation Autistic Self Advocacy Network (ASAN) The Color of Autism Foundation   Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com   Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.   The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ.

In this conversation, Kim Zayhowski discusses the distinctions between sex and gender, emphasizing that sex is biological while gender is a social construct. She explores the complexities of chromosomes, the fluidity of gender identity, and the implications of societal norms on individual expression. The discussion also touches on the weaponization of scientific terminology in policy-making, the intersection of transphobia and misogyny, and the importance of recognizing diverse gender identities. Zayhowski advocates for active allyship and resistance against discriminatory policies, highlighting the importance of empathy and understanding in fostering a more inclusive society.   Key Takeaways: Sex and gender are not interchangeable terms. Biological sex is complex and not binary. Gender identity is shaped by culture and personal experience. Cisgender individuals have a gender identity that matches their assigned sex at birth. Scientific misconceptions can be weaponized in policy-making. Transphobia is often rooted in misogynistic beliefs. Healthcare policies must respect bodily autonomy for all individuals. Inclusive language is essential in healthcare discussions.   Kim Zayhowski 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. Her research focuses on the intersection of LGBTQIA+ care and genetics.   Please subscribe to this podcast on Apple Podcasts, Spotify, Amazon Music, 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: Episode 22 with Kaitlyn Brown- What are sex trait variations and how do we support intersex individuals? Tested podcast about sex testing in elite sports from NPR Book, Sex Itself by Sarah S Richardson Bridging the gap: Time to integrate sex and gender differences into research and clinical practice for improved health outcomes by Roberta Gualtierotti     Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ.   

In this conversation, Eric Green discusses the role of the National Human Genome Research Institute (NHGRI) in leading the Human Genome Project and advancing genomic research. He shares his journey at NHGRI, highlighting the significant progress made in genomic medicine, including the All of Us Research Program, which aims to collect genomic and health data from a diverse population. Dr. Green emphasizes the importance of public sector involvement in data sharing and the challenges faced in genomic research. He also addresses the potential impact of funding cuts on future research initiatives. Dr. Green discusses the importance of public advocacy for genomics research and the need for a more equitable approach to genomic medicine. We  highlight the growing relevance of genomics in healthcare and the necessity for better public understanding and communication of genomic information.   Key Takeaways: The NHGRI was established to lead the Human Genome Project. Genomic information can improve disease diagnosis and treatment. The cost of sequencing a human genome has drastically decreased. The All of Us Research Program aims to collect genomic and health data from a million participants. Public sector involvement is crucial for data sharing in genomics. Funding cuts to NIH could severely impact genomic research initiatives. There is a risk of losing a generation of young scientists due to current policies. Healthcare professionals need to be equipped to discuss genomics with patients. The future of genomic medicine depends on continued research and public engagement.   Dr. Eric Green is a genomics researcher, Human Genome Project participant, and former Director of the National Human Genome Research Institute (NHGRI) at the U.S. National Institutes of Health (NIH). He was the third NHGRI Director, having been appointed by NIH Director Dr. Francis Collins in 2009. He served as NHGRI Director from 2009 to 2025. Dr. Green was at NHGRI for over 30 years, during which he was appointed to multiple key leadership positions prior to becoming the NHGRI Director. This included serving as the NHGRI Scientific Director for 7 years, Chief of the NHGRI Genome Technology Branch for 13 years, and Founding Director of the NIH Intramural Sequencing Center for 12 years. For just over two decades, Dr. Green directed an independent research program that included integral start-to-finish roles in the Human Genome Project, groundbreaking work on mapping, sequencing, and comparing mammalian genomes, and key discoveries about the genes involved in several rare genetic diseases. Dr. Green earned his M.D. and Ph.D. degrees in 1987 from Washington University in St. Louis; coincidentally, the word “genomics” was coined in that same year. Throughout his career, he has authored and co-authored over 395 scientific publications. Dr. Green has earned multiple honors and awards, including election to the National Academy of Medicine in 2023. Following his greater than 30 years of public service as a federal employee at NHGRI and NIH, Dr. Green is now using his extensive experience in leading government-funded research programs to foster the expansion of genomics in academia, healthcare, and everyday life.   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: National Human Genome Research Institute (NHGRI) National Institutes of Health (NIH) All of Us Research Program The Human Genome Project by Francis Collins and Leslie Fink Science impacts from recent limitation efforts from current administration: Do you remember the Human Genome Project? I’m not sure the Trump administration wants you to Trump’s proposed budget would mean ‘disastrous’ cuts to science Scientific Research is Getting Cut—and That Should Scare All Americans Cuts to science agencies undermine hope for American health and economies from the American Society for Biochemistry and Molecular Biology PBS News Hour- Scientists sound the alarm on Trump administration’s dismantling of research funding Ways to make your voice heard on saving science and genomics Contact your representative Share your support for science on social media, engage in conversations with friends and family, and participate in local town halls Advocate for individuals who support science and evidence-based decision-making in federal agencies The Bethesda Declaration:  A Call for NIH and HHS Leadership to Deliver on Promises of Academic Freedom and Scientific Excellence   Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. 

In this conversation, Dr. Shelley Sella discusses her book “Beyond Limits: Stories of Third-Trimester Abortion Care” and her experiences in providing third trimester abortion care. She emphasizes the importance of understanding the circumstances that lead individuals to seek such care, the emotional and psychological aspects involved, and the need for compassionate support. The discussion also touches on the legal implications surrounding abortion, the safety of the procedures, and the necessity for empathy and understanding in the healthcare system. Key Takeaways: Third-trimester abortion care is often stigmatized and misunderstood. The emotional and spiritual aspects of care are integral to the process. Legal restrictions are increasing, making access to care more difficult. Support systems are crucial for patients undergoing these procedures. Abortion is far safer than continuing a pregnancy in many cases due to the high maternal mortality rate in the United States The stories of patients can help demystify and destigmatize the procedure.   Dr. Shelley Sella is a retired Board Certified Ob-Gyn and the first woman to openly provide third trimester abortion care in the United States. For 20 years Dr. Shelley Sella – an OB-GYN and the first woman to openly provide third-trimester abortion care in the United States – saw patients whose diverse backgrounds and circumstances led them to the same difficult decision: to end their pregnancies. Now, in her beautifully written and compassionate first book BEYOND LIMITS: Stories of Third-Trimester Abortion Care (June 3, 2025; Beacon Press; $27.95), Dr. Sella shares deeply intimate, profoundly human stories of this widely misunderstood experience. Combining candid memoir with expert account, Sella interweaves her patients’ stories with her own personal and professional journey (including her mentorship under Dr. George Tiller) to reveal why she dedicated her life to this work. Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic:. Purchase book at bookstore.org Remembering Dr. George Tiller Los Angeles Times piece from 2015 on Dr. Susan Robinson Information on midwifery from WHO Overturning of Roe v Wade from NPR Southwestern Women’s Options Website to share stories about abortion from the National Abortion Federation Article on the high maternal mortality rate in US The Turnaway Study that describes the mental health, physical health, and socioeconomic consequences of receiving an abortion compared to carrying an unwanted pregnancy to term Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. 

This is a replay of our bonus episode that was released on March 28, 2025 and prior to Regeneron Pharmaceuticals purchasing 23andMe. Regeneron entered the asset purchase agreement on May 19, 2025 and states it plans to maintain the consumer genetics business. Regeneron also stated it would prioritize the privacy, security and ethical use of 23andMe's customer data. See more about the announcement here. In this episode, we explore the complexities of genetic data privacy, particularly in light of 23andMe's recent bankruptcy filing. Anya Prince discusses the implications for customer data, the legal protections in place, and the unique risks associated with genetic information. The discussion also covers the challenges of data de-identification, customer rights regarding data deletion, and the potential for data breaches. The conversation concludes with reflections on the global landscape of genetic data privacy and the importance of understanding personal values in relation to data sharing.   Key Takeaways: 23andMe's bankruptcy raises concerns about customer data. New ownership of 23andMe or its data could change how genetic data is used. Security breaches pose significant risks to genetic data. Global laws on data privacy vary significantly. Understanding personal values is crucial in data sharing decisions.   Anya Prince, Professor of Law, Joseph F. Rosenfield Fellow in Law Professor Prince’s teaching and research interests explore health and genetic privacy, with a particular focus on genetic discrimination, the health privacy implications of big data, and the ethical, legal, and social implications of genomic testing. Her research particularly explores the intersections of social and biological data by interrogating the ethical and legal implications of how genetic data can be used to predict social traits and behaviors and, conversely, how social data can be used to predict medical information, including reproductive information. Her interdisciplinary work has been published in legal, bioethics, and medical journals, including the Boston College Law Review, North Carolina Law Review, Iowa Law Review, JAMA, the American Journal of Bioethics, Journal of Law, Medicine, and Ethics, and Genetics in Medicine.   In 2022, she was awarded a four-year R01 grant from the National Human Genome Research Institute (NHGRI) at the National Institutes of Health (NIH) to study the ethical, legal, and social implications of sociogenomic polygenic scores. In 2023, she was awarded a Bridging Bioethics, Research & Policymaking grant from the Greenwall Foundation to develop resources regarding state-level genetic privacy legislation. In addition to these grants, Professor Prince is an investigator, consultant, or advisory board member on multiple other NIH-funded projects. She had previously been awarded a Pathway to Independence Award (K99/R00) from NHGRI to examine the use of genetic information by life, long-term care, and disability insurers.   Professor Prince is a former Visiting Assistant Professor of Law at Indiana University’s Robert H. McKinney School of Law, where she taught Employment Law and Genetics and the Law. Before joining the legal academy, she served as a Post-doctoral Research Fellow at the UNC Center for Genomics and Society (CGS) in the Department of Social Medicine at UNC-Chapel Hill School of Medicine. Professor Prince has also worked as a Skadden Fellow and Staff Attorney at the Cancer Legal Resource Center in Los Angeles, California.   You can follow her @anyaprince.bsky.social   Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com   Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals.   Here are more resources related to today’s topic: Press Release from 23andMe about Voluntary Chapter 11 Initiation 23andMe Privacy Information California Attorney General Consumer Alert 23andMe HIPAA Information from US Department of Health and Human Services SNP genotyping: technologies and biomedical applications Article from Slate on GEDMatch being Acquired by Verogen Article from BBC News on 23andMe Profiles Being Hacked What is GDPR from gdpr.edu   Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com   Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.   The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ.   

In this conversation, we delve into the complexities surrounding intersex and transgender identities, focusing on medical ethics and the importance of patient autonomy. Our guest, Kaitlyn Brown, discusses their advocacy for the intersex community, emphasizing the importance of trauma-informed care in healthcare settings. We talk about the differences between intersex and transgender identities, the prevalence of intersex conditions, and the challenges faced by parents of intersex children. The discussion highlights the complexity of genetic definitions and the need for better understanding and support within the healthcare system. It highlights the ongoing legislative challenges that threaten the rights and healthcare access of these communities, while also emphasizing the need for advocacy and allyship. Key Takeaways: Intersex conditions encompass a wide range of biological variations. Parents need support in navigating intersex diagnoses. Genetic definitions of intersex are complex and varied. Healthcare providers must approach intersex care with sensitivity. Surgical interventions for intersex individuals are controversial and complex. Patient autonomy is crucial in medical decisions regarding gender assignment. Legislation is increasingly targeting transgender and intersex communities. Inclusive conversations about sex and gender are essential in healthcare. Cisgender individuals can use their privilege to advocate for intersex and transgender rights.   Kaitlyn Brown is a certified genetic counselor from New Zealand who is endosex and identifies as a genderqueer femme, assigned female at birth. Currently a laboratory genetic counselor specializing in cell-free DNA prenatal screening, Kaitlyn has been an active advocate for the intersex community/ people with differences of sexual development and assisted in care management as a former pediatric genetic counselor and researcher. They have been involved with passing government initiatives to legislate awareness and understanding of differences of sex development for healthcare professionals and others who care for this community. Given the history of harmful practices performed on intersex and gender diverse people, Kaitlyn uses a trauma-informed lens to educate about sex development and incorporate both sex- and gender- diverse experiences and needs. They can be found on Bluesky as geneticsbtb.bsky.social   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, genetic counselors. InterACT- Advocates for Intersex Youth Sambia culture of Papua New Guinea and “turnim-man” Trauma Informed Care Intersex Justice Project Strategy Lab for Intersex Movements (SLIM) InterConnect Support Tested podcast about sex testing in elite sports from NPR Book, Sex Itself by Sarah S Richardson   Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. 

We are featuring an episode from another podcast on Gene Pool Media, DNA Today. True crime dominates the podcasting world, but what about the genetic aspects behind these cases? In this episode of DNA Today, we dive into the pivotal role of DNA in forensic science with Dr. Henry Erlich, a pioneer in DNA analysis and a key figure in developing polymerase chain reaction (PCR) technology. His work has transformed the criminal justice system, from solving cases to overturning wrongful convictions. Dr. Henry Erlich has authored over 450 publications and spent decades applying DNA analysis to criminal investigations, missing persons cases, and ancestry research. His lab performed the first DNA case in the US and, in 1988, the first DNA exoneration. Erlich was the Director of the Department of Human Genetics and Vice-President of Discovery Research for Roche Molecular Systems, Inc until 2013. He is currently a Senior Scientist at Benioff Children’s Hospital Oakland Research Institute.  After reading his book Genetic Reconstruction of the Past, I had countless questions about how PCR reshaped the justice system, its impact on exonerations, and the ethical implications of forensic DNA databases. Trigger Warning: This episode contains discussions of murder and sexual assault, which may not be suitable for young listeners.   Key Takeaways: The development of PCR technology and its revolutionary impact on forensic genetics How PCR outperformed older methods like RFLP in criminal case investigations Pennsylvania vs. Pestinikas (1986), the first criminal case using DNA analysis Key forensic DNA terms explained: inclusion, match, exclusion, and random match probability The role of DNA evidence in exonerations and wrongful convictions How forensic labs analyze DNA from multiple individuals at crime scenes The establishment of the FBI’s National DNA Index System (NDIS) and who is included The ethical concerns surrounding partial DNA matches and familial searching How public DNA databases like GEDmatch helped identify the Golden State Killer Dr. Erlich’s insights into the O.J. Simpson case and its impact on public perception of forensic DNA Resources and Links: Read Genetic Reconstruction of the Past by Dr. Henry Erlich Explore the National DNA Index System (NDIS) and CODIS The Innocence Project: Fighting wrongful convictions with DNA evidence GEDmatch and its role in forensic investigations Please subscribe to All Access DNA and DNA Today on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. 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. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ.

In this episode, Kate talks to Matt Hay about is book, “Soundtrack of Silence”. Matt opens up about his experience with neurofibromatosis type 2 (NF2), a genetic condition that led to profound hearing loss- and ultimately, the creation of his memoir, “Soundtrack of Silence: Love, Loss, and a Playlist for Life”. We explore his and his wife’s journey with IVF and preimplantation genetic testing, how they faced life-changing diagnoses together, and why his wife is the true hero of his story. Matt tells us how music shaped his life and how he continues to connect with it after hearing loss, the emotional impact of NF2, and the one song that defines his life today. Matt Hay (IU MS’99, MBA’09, DrPH’26) has a long journey toward deafness and even longer journey toward learning to “hear” again with an experimental brainstem implant. Now an global in-demand keynote speaker, he first publicly shared his story on a National Public Radio (NPR) podcast titled Soundtrack of Silence. The intimate, funny and authentic peek at what it’s like to start a career, fall in love and build a life while battling a rare disease inspired actor Channing Tatum and Paramount Pictures to option the motion picture rights to Matt’s life story. Matt’s memoir Soundtrack of Silence was released in 2024 by St. Martin’s Press, an imprint of Macmillan. Publishers Weekly said Hay’s “moving memoir makes magic out of facing the music” and it immediately earned a spot as an Amazon Best Seller within the Disability Category. When Matt isn’t adding tracks to the soundtrack of his life, he passionately supports the hearing loss community as a member of the Columbia University Genetic Counseling Advisory Board and previously as a consultant to the St. Joseph Institute for the Deaf. He proudly served as a Congressional lobbyist for neurofibromatosis (NF) research funding, the genetic disorder that caused his hearing loss, and has raised money for NF research by doing endurance events, including an Ironman Triathlon and the Boston Marathon. He didn’t win either one. Matt currently serves the rare disease community as the US Director of Advocacy for a global biopharmaceutical company and is a doctoral candidate at the Indiana University School of Public Health with a focus on global health leadership. He lives in Westfield, Indiana, with his wife (whom he’s quick to point out is the hero of his story) 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 Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic: Findageneticcounselor.org to search for a genetic counselor near you But Matt’s book on Bookshop.org HERE Info on NF2 from National Organization for Rare Disorders American Society for Reproductive Medicine   Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. 

In this conversation, Barry Tong discusses the complexities of cancer genetics, emphasizing the intersection of genetic factors and public health. He explains how cancer arises from both genetic predispositions and environmental influences, and the importance of personalized risk assessments. The discussion also highlights the role of family history in cancer risk, and the challenges faced by patients navigating a cancer diagnosis, and the need for accessible genetic services in underserved communities.  Key Takeaways: Public health aspects are crucial in understanding cancer. Misconceptions about cancer origins can hinder patient understanding. Personalized risk assessments are essential for effective cancer prevention. Polygenic risk scores are emerging tools for assessing cancer risk. Access to genetic services is crucial for underserved populations. Barry Tong is a currently a genetic counselor supervisor at the UCSF Health Cancer Genetics and Prevention Program. Previously, Barry held several medical affairs and sales roles at Myriad Genetic Laboratories, and is a graduate of the University of Michigan Genetic Counseling and Public Health dual degree program. He is passionate about equitable access to genetics services, genetic counselor education and mentoring, and ensuring diverse and equitable entry into the genetic counseling profession. Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and support our independent podcast to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic: What is a polygenic risk score? From National Human Genome Research Institute Wisdom study with the goal to change the way breast cancer is detected and risk is reduced Find A Genetic Counselor from NSGC.org Multifactorial and Complex Disorders Episode 14- Colon Cancer: What is Lynch syndrome? Episode 12- Who has surgery to prevent colon cancer? Episode 7- Are leukemia and lymphoma hereditary? Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. 

In this conversation, Kevin Alexander shares his personal journey living with PKU (phenylketonuria) and his passion for newborn screening advocacy. He discusses the importance of dietary therapy, the challenges of navigating insurance coverage for treatment, and the critical role of newborn screening in early detection. We discuss the recent policy changes enacted without warning by the current administration and how that impacts newborn screening practices. Kevin shares personal stories and experiences that highlight the need for advocacy and community involvement in maintaining and improving the newborn screening system.  Key Takeaways: PKU is an inborn error of metabolism that requires lifelong dietary therapy. Newborn screening is crucial for early detection of PKU to prevent brain damage. Newborn screening includes a simple blood test to evaluate for various conditions. The recommended uniform screening panel (RUSP) guides which diseases are screened. Recent policy changes threaten the inclusion of new conditions in newborn screening. The newborn screening system is crucial for public health. Kevin Alexander is an adult living with PKU. He's also a filmmaker, and since 2012 has been traveling the world as a PKU, newborn screening, and rare disease advocate. He's a volunteer for the National PKU Alliance, an advocate with the Louisiana Metabolic Disorders Coalition, and a member of the International Society of Neonatal Screening. You can find him online at: IG: @kevinalexander_pku FB: www.facebook.com/pkujournal LinkedIn: www.linkedin.com/in/kevinalexander/   Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and support our independent podcast to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic: My PKU Life | A Short Film about My PKU Experience  Regaining Hope: My Journey to Rare Disease Advocacy | A Podcast Episode about the intersection of life, rare disease, and mental health Newborn Screening Is A Human Right | A blog article with Kevin’s thoughts on the termination of the Advisory Committee on Heritable Disorders in Newborns and Children The National PKU Alliance Baby’s First Test- information on newborn screening National Organization for Rare Disorders Original landing page for the Advisory Committee on Heritable Disorders in Newborns and Children The Recommended Uniform Screening Panel or RUSP Hunters Hope- non-profit for Krabbe and other leukodystrophies, as well as newborn screening starting by Jim and Jill Kelly For Katy: A Film About Newborn Screening For more information on rare disease, listen to episode 10- When is rare disease not so rare?  Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. 

In this conversation, Priscila discusses Parkinson's disease, its genetic and environmental factors, and the role of genetic counseling. She highlights the PD Generation study, which aims to increase awareness and understanding of Parkinson's disease, particularly in diverse communities. Priscila emphasizes the need for inclusive research and the role of language access in genetic counseling, sharing her personal motivations for advocating for better access to care and information for all individuals affected by Parkinson's disease. Key Takeaways: Parkinson's disease is a neurodegenerative disorder affecting movement. The causes of Parkinson's are multifactorial, involving genetics and environment. Genetic testing can identify variants that increase the risk of Parkinson's. Everyone has a background risk for developing Parkinson's disease. Diversity in research helps understand genetic differences across populations. Language access in genetic counseling improves patient understanding and care. Community outreach is essential for increasing participation in research. Priscila D. Hodges joined Indiana University School of Medicine in May 2020. She earned her master’s degree in Genetic Counseling from Northwestern University in 2015 and has nearly a decade of experience in bilingual prenatal genetic counseling within multicultural settings. Currently, Hodges offers bilingual genetic counseling to participants in Parkinson’s disease research, ensuring culturally sensitive care. As a passionate advocate for outreach in the Hispanic/Latine community, she plays a vital role in expanding access to genetic services and increasing research participation, striving to bridge healthcare gaps and enhance representation for underserved populations within the Parkinson’s community. Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com Check out our Patreon at patreon.com/allaccessdna and consider donating to get bonus content, submit questions for our guests, and connect with other genetic-curious individuals. Here are more resources related to today’s topic: Findageneticcounselor.org Breaking Barriers: Advancing Genetic Counseling for Parkinson’s in Latin America by Priscila D. Hodges Parkinson's Foundation The Michael J. Fox Foundation for Parkinson’s Research World Parkinson Coalition World Parkinson Congress 2026 Interview with Dr. Ignacio Mata about the Latin American Research consortium on the Genetics of Parkinson’s Disease (LARGE-PD) Information on PD GENEration research study  Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health. The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ.