Best Trisomy 13 Podcasts (2024)

1
Ministry Moment: Created For Community 5:37

2h ago5:37

5:37

In this Ministry Moment, Julie encourages listeners to lean into community with the reminder that scripture repeatedly demonstrates the power of joining with others, especially in challenging times. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Throug…

1
Episode 208: Mia Polacek and Edwards Syndrome Association (Trisomy 18) 50:48

8d ago50:48

50:48

Jeanna Polacek, mom to 5 year old Mia who has full Trisomy 18 and co founder of Edwards’ Syndrome Association joins Extra To Love: A Trisomy Podcast to discuss their surprising birth diagnosis, the milestones Mia has reached, the relationship Mia has with her baby sister, as well as the heart and mission of Edwards’ Syndrome Association. We also di…

1
Ministry Moment: Gratitude In All Circumstances 7:16

18d ago7:16

7:16

This week Julie discusses nurturing a spirit of gratitude and choosing to see God's hand in the midst of difficulties. If you are struggling to feel gratitude, let your challenge this week to be acknowledging your blessings. When you notice the good things in your life, even something like air conditioning in the summer heat, write it down or say t…

1
Episode 207: Let's Talk Home Nursing 1:04:10

24d ago1:04:10

1:04:10

Home Health Nurse of 15 years and medical mom Tomi Moe joins Extra To Love: A Trisomy Podcast to share her perspective on how to identify and keep great nurses, realistic expectations for parents and more. Her experience being in many home as a nurse and also having nursing in her home for her child gives her unique and valuable insight to share. W…

1
Ministry Moment: Considering Joseph on This Father's Day 6:47

1M ago6:47

6:47

In this Ministry Moment, Julie considers Joseph's role in our saviors life, and how we can glean the importance of an earthly father from what we know about him. Like Joseph, man trisomy fathers are thrown into situations they never could have predicted. Faith in God empowered Joseph to not only accept the situation, but to be the husband Mary need…

1
Ep 206: Kora, The Kindergarten Graduate! (Trisomy 13) 50:23

1M ago50:23

50:23

Kelly, mom of 5 year old Kora, who has Trisomy 13 (Patau Syndrome) joins us to share their story of ups and downs, and the beautiful life that Kora now leads as a big sister and almost-first-grader. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Throug…

1
Ministry Moment: Doing God's Work 6:29

2M ago6:29

6:29

In this week's Ministry Moment, Julie encourages listeners to remember that we are doing the Lord's work every day, and reminds listeners to consider Colossians 3:23-24 - in whatever you do, work as if you are working for the Lord. Caring for a child with disabilities such as those associated with Trisomy 13 and Trisomy 18 can be taxing and can lea…

1
Ep 205: Trisomy Grandmother; It Starts With Yes 45:22

2M ago45:22

45:22

On this episode of Extra To Love: A Trisomy Podcast , we're talking to Jennifer Springer, Director of Operations for ETL. Jennifer is connected to the trisomy community through her granddaughter, Sage, who had trisomy 18. Jennifer talks about the choice to be the "village" that is needed to raise a child with disabilities, her love for the trisomy …

1
Ministry Moment: Starting Your Prayer Life 8:12

2M ago8:12

8:12

Julie Hawkins, Extra To Love Board Member and a Director of Children's and Family Ministry, begins a new feature on the ETL Podcast, Ministry Moments. It is our hope that each Ministry Moment provides the uplifting encouragement you need to continue seeking God's face through uncertainty. Extra To Love is a non-profit organization that aims to impr…

1
Ep 204: Speaking Life Over Eloise (Trisomy 18) 1:04:54

2M ago1:04:54

1:04:54

Lacey Ponder, mom of Eloise who lived 14 months and had Trisomy 18, discusses the shock of their birth diagnosis, the decision to focus on speaking life over her daughter, and how she finds comfort in the truths of the gospel as a bereaved mother. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 an…

1
Ep 203: Siblings of Children with Trisomy 48:38

4M ago48:38

48:38

Families are often told to consider the burden their child with special needs will have on their neurotypical children. What better way to remove the stigma than to allow the opportunity for their siblings to speak on their experience! Five children ranging in ages 13 to 17 joined the Extra to Love podcast to discuss their prospective of having a s…

1
Ep 202: Cecilia's Resilience (Trisomy 13) 49:27

5M ago49:27

49:27

Audrey Mercier gives a glimpse into the life she has with her daughter, Cecilia "Cece" who has Partial Trisomy 13. She was vulnerable with her heart and journey. She has just completed her first year of medical parenthood and is doing an incredible job! You can find her on facebook and instagram @reslilientmama_co. Extra To Love is a non-profit org…

1
Ep 201: We are Back! 23:54

6M ago23:54

23:54

Emma, Jenn and Amber announce some exciting changes and goals for 2024 with services offer from Extra to Love. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope effected families will be empowered, connect…

1
Ep 111: You can still have a full life despite the diagnosis! 37:57

9M ago37:57

37:57

Charity joins Emma and Amber on this episode to talk about the way she juggles her many hats and accomplishments. Charity has a heart to serve and give Maggie a life well lived and loved! The diagnosis her daughter has wasn't the end, but a beautiful revelation of things that really matter in life! Extra To Love is a non-profit organization that ai…

1
Ep 110: The first and more of Birthdays! 51:19

9M ago51:19

51:19

Jenn, Emma, and Amber discuss the events and emotions leading up to the very emotional first birthday of their children with Trisomy. We are often told the chances of even getting one is slim to none, as the first has come to pass, they discuss what it feels like as each birthday for their child comes back around. Asher is a little boy who will be …

1
Ep 109: Journey's journey with Trisomy 13 50:49

10M ago50:49

50:49

The name "Journey" is the perfect name for a little girl who is described by her Mom as an answered prayer and a true blessing in her life! Listen in as her Mom, Deirdra tells the story of her birth, diagnosis, and the advocacy that has followed. Journey is a four year old girl who is quite the fashionista, and has a beautiful relationship with her…

1
Ep 108: Our Hospice/Comfort Care Experience 48:33

10M ago48:33

48:33

Amber, Jenn, and Emma discuss their experience with "Hospice/Comfort Care" measures. One of us skipped over it, the other was not given a choice and the last of us chose it! In this episode we discuss our vastly different experiences and what lead us to make the decisions we did. We discuss the importance of titration of the FIO2 for your child. Di…

1
Ep 107: The start of Asher's Army 30:30

11M ago30:30

30:30

Podcast Co-Host Jenn takes us through the journey of her own grief of loss and life with another medically complex child. Asher, is her four year old son who has Trisomy 18, the odds have been completely stacked against him from the beginning. Asher has done incredible and amazing things despite the statistics he was compared to! Extra To Love is a…

1
Ep 106: Finding God in the Details: Maggie's Story 34:47

11M ago34:47

34:47

Charity Nelson tells the story of her pregnancy, birth and life with daughter Maggie who is 3 years old and has Trisomy 18 (Edwards Syndrome). With a trach and GJ tube and two fun siblings, Maggie's story demonstrates the way medical complexity and fullness of life can coexist. Charity shares how she has witnessed God in the details of Maggie's lif…

1
Ep 105: Talking to your typical kids and friends! 1:01:04

11M ago1:01:04

1:01:04

Amber, Jenn and Emma sit down with Jenn’s close friend, Laura, to discuss how raising a child with trisomy has impacted their friendship. The ladies have an insightful conversation regarding how to discuss medical complexities with typical children and how to be a supportive friend to someone with a disabled child. Extra To Love is a non-profit org…

1
Ep 105: Indiana (Trisomy 18) 28:44

12M ago28:44

28:44

In this episode Kathryn discusses the impact her daughter's Trisomy 18 diagnosis had on her as a NICU nurse and her family. Indiana's lasting impact on her family isn't determined by the length of her life! Kathryn discusses the complications she had and all the things that make her daughter the blessing that she is. Extra To Love is a non-profit o…

1
Ep 104: Date Night? 56:37

1y ago56:37

56:37

Emma, Jenn, and Amber discuss the current state of their marriages and the impact a special needs child has had on their relationships and friendships. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by supporting their families. Through Extra To Love: A Trisomy Podcast, we hope eff…

1
Ep 102: Sage's Story (Trisomy 18) 46:06

1y ago46:06

46:06

Emma Springer, founder and Executive Director of Extra To Love, tells her journey with her daughter Sage's diagnosis, delivery and life. Emma is a mother of 2 and Registered Nurse. Sage is the inspiration behind Extra To Love! Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Trisomy 13 by suppo…

1
Ep 101: What is Extra to Love? 51:35

1y ago51:35

51:35

In this weeks Extra Caffeinated Mom's segment, Amber, Jenn and Emma reflect a bit on statistics, and whether or not they are accurate. They also share a peak into their kid's stories by talking about the accessories they have. So grab whatever fuels you, and join these extra caffeinated moms as they premier the Extra to Love Podcast. If you are a f…

1
#235 Genetic Counseling History: ABGC Formation

1y ago

—

If you are one of the listeners that tune into DNA Today every week, then you definitely know by now we have launched our Patreon. This is where you can not only get bonus content from DNA Today, you can get early access to episodes before the public. You also get to influence the content of the show, this includes episode topics and guests plus pi…

1
#234 Genetic Counseling History: 1st NSGC Conference

1y ago

—

Congratulations to everyone who matched with a genetic counseling program last week! Special shoutout to our Communications Lead, Corinne Merlino, for matching with the University of Pennsylvania! Check out DNA Today Episode #101, Genetic Counseling Match Day, to prepare you to start grad school. We also provide advice for applicants that didn’t ma…

1
#233 At-Home Non-Invasive Prenatal Screening with Juno Diagnostics

1y ago

—

We are officially launching our Patreon next week on DNA Day, April 25th! To celebrate the 70th anniversary of the discovery of the structure of DNA and 20th anniversary of the completion of the human genome. By becoming a Patreon supporter you can receive benefits like joining our exclusive genetics book/movie club, mentorship sessions with me, ev…

1
#232 Entrepreneurship in Genetics with Matt Tschirgi

1+ y ago

—

We are thrilled to be launching our Patreon very soon. It might be on a genetics holiday, I’ll let you figure that one out. In the meantime we would appreciate your insight on what you want from the Patreon. It’s your last chance to fill out our survey so that we will offer the benefits you want. You can access the 60 second survey here. Maybe you …

1
#231 ChatGPT and AI In Genetics with Daniel Uribe

1+ y ago

—

Have you heard? We are launching a Patreon! For those that are not familiar with Patreon, it’s a platform that allows creators (like podcasters) to offer their followers more content, experiences, and even gifts. We have an exciting list of ideas on what we will offer you listeners, but we want you to make the final decisions on which benefits we e…

1
#230 Cancer Pharmacogenetics with Dr. Jamie Fettig

1+ y ago

—

As you may have heard, we are launching a Patreon! For those that don’t know what Patreon is, it’s a platform that allows creators (like podcasters) to offer their followers more content, experiences, and even gifts. We have a survey that will be open for a limited time so get your input in now so we can provide the benefits you want. Maybe that’s …

1
#229 Pharmacogenomics with Avni Santani

1+ y ago

—

We have an exciting announcement, we are launching a Patreon! For those that are not familiar with Patreon, it’s a platform that allows creators (like podcasters) to offer their followers more content, experiences, and even gifts. In order to provide what YOU want, please take 60 seconds to fill out our survey. By filling out the survey not only ar…

1
#228 Trisomy 13 and Trisomy 18 with Divya Ramachandra

1+ y ago

—

Update: One of our recurrent guests genetic counselor and fellow podcaster Laura Hercher had a couple important thoughts after listening to our episode we want to share. Laura has been a guest on Episodes 157 & 191 where she has shared her insight on abortion bans including Texas SB 8 and the overturn of Roe v. Wade. “I understand the reasons for m…

1
#227 Limb-Girdle Muscular Dystrophies with Louise Rodino-Klapac and Livija Medne

1+ y ago

—

In this episode, we are exploring limb-girdle muscular dystrophy (LGMD). Joining us for this conversation are two experts, Dr. Louise Rodino-Klapac, and genetic counselor Livija Medne. Dr. Louise Rodino-Klapac is the Executive Vice President, Head of R&D and Chief Scientific Officer at Sarepta Therapeutics who has 15 years of experience researching…

1
#226 NICU Whole Genome Sequencing with Hong Li and Madhuri Hegde

1+ y ago

—

Can rapid whole genome sequencing (WGS) be utilized in the NICU setting? We explore in this podcast episode! Joining us for this episode is Dr. Hong Li, a clinical geneticist at Emory University. Our other expert is a recurring guest, world-renowned geneticist Dr. Madhuri Hegde. She serves as the Senior Vice President and Chief Scientific Officer o…

1
#225 Fetal Antigen Noninvasive Prenatal Testing (NIPT) with BillionToOne

1+ y ago

—

Last episode we learned about non-invasive prenatal testing (NIPT) for recessive conditions through BillionToOne’s UNITY Screen. Jen Hoskovec, Senior Director of Medical Affairs at BillionToOne, is back for this episode where we are exploring NIPT for fetal antigen. Jen is BillionToOne’s Senior Director of Medical Affairs. Jennifer Hoskovec, MS, CG…

1
#224 Single-Gene Noninvasive Prenatal Testing (NIPT) with BillionToOne

1+ y ago

—

In this episode we are learning about UNITY Screen non-invasive prenatal testing (NIPT) for recessive conditions. Joining our host Kira Dineen are two experts from BillionToOne, the CEO Oguzhan Atay and the Senior Director of Medical Affairs, Jen Hoskovec. Stay tuned for our part two about their new fetal antigen NIPT! Oguzhan Atay, PhD, BillionToO…

1
#223 PhenoTips: Rare Disease Diagnosis Workflow

1+ y ago

—

Happy Rare Disease Month! With over 10,000 rare diseases, reaching a diagnosis is a long and arduous process for the 300 million people affected by a rare disease worldwide. Advancements in technology, bioinformatics, and improved collaboration hold the promise to end or reduce this diagnostic odyssey; however, valuable diagnostic data still remain…

1
#222 Wilson’s Disease with Naseem Amin

1+ y ago

—

We are kicking off Rare Disease Month by talking about Wilson’s disease, a rare, inherited disorder that causes copper to accumulate in the liver, brain, and other vital organs. It is inherited in an autosomal recessive pattern and left untreated, Wilson’s disease can be fatal. Joining us for this episode is Naseem Amin, the CEO of Orphalan, which …

1
#221 Genetic Counseling in South Africa with Samantha Bayley and Tina-Marié Wessels

1+ y ago

—

In this episode we are chatting about the genetic counseling field in South Africa! Joining us for this discussion are two guests from the University of Cape Town (UTC), current student, Samantha Bayley, and UCT-professor, Tina-Marié Wessels. Special thanks to our social media intern, Kajal Patel, for recommending Samantha and Tina for this episode…

1
#220 Microfluidics with Franz Pruefer

1+ y ago

—

This week we’re discussing all things microfluidics! Joining us for this discussion is Franz Pruefer. He is the Co-Founder of Maxwerk Bio which has a pipeline of biotech diagnostic and therapeutic devices. Franz is also the Co-Founder of CERTESS Therapeutics an early stage Cell Therapy Company in stealth mode based in Cambridge, Massachusetts. Unde…

1
#219 It Happened To Me Podcast: Genetic Counselors for Rare Diseases

1+ y ago

—

A new year means a new podcast! We are thrilled to announce that our host, Kira Dineen, is a co-producer of a new rare disease and medical challenges podcast called, It Happened To Me. In celebration of the launch we wanted to share an upcoming episode of the podcast where the hosts Cathy Gildenhorn and Beth Glassman interviewed Kira Dineen. There …

1
#218 LEND Program with Betsy Humphreys, Karen Volle & Karina Mancini

1+ y ago

—

Happy New Year! Joining us for the first episode of 2023 is Betsy Humphreys, Karen Volle and Karina Mancini, who will share their experience with the New Hampshire-Maine Leadership Education Neurodevelopmental Disabilities (LEND) and the New England Regional Genetics Network programs, and how they relate to genetics advocacy. Elizabeth Humphreys is…

1
#217 SynGAP1 with Mike Graglia and Elli Brimble

1+ y ago

—

Patient advocate, Mike Graglia, and genetic counselor, Elli Brimble, join DNA Today for a conversation about SYNGAP1-related non-syndromic intellectual disability, a rare genetic disorder caused by a variant on the SYNGAP1 gene. Mike Graglia has always worked on complicated problems – he can’t help himself. So when his son was diagnosed with SYNGAP…

1
#216 African American Ancestry with Nicka Smith

1+ y ago

—

Nicka Smith (she/her), a pro genealogist with over 20 years of experience, joins DNA Today for our second to last episode of the year! She is the host of BlackProGen LIVE, a web series focused on genealogy and family history with a special focus on people of color. Nicka Smith is a professional photographer, speaker, host, consultant, and documenta…

1
#215 Preventative Health via Whole Exome Sequencing

1+ y ago

—

Our guest today is Dahlia Attia-King, Founder and CEO of Panacea. Panacea’s mission is to improve access and utilization of genetic testing by offering affordable whole exome sequencing, physician oversight, and genetic counseling all in a 10 minute workflow. This week we are chatting about utilizing whole exome sequencing for preventive health. Da…

1
#214 2022 Genetics Wrapped with Eric Green

1+ y ago

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Are you seeking a position as a Genetic Assistant? People in these vital roles aid with clinical and research patient communication, data entry, genetic testing coordination, and administrative tasks. Therefore training is key! We recommend The Genetic Assistant Online Training Program at Johns Hopkins University School of Medicine. This online pro…

1
#213 Congenital Adrenal Hyperplasia and Gender with Sage Sargent

1+ y ago

—

It’s December which means Spotify Wrapped was announced! If you are one of the 2,616 people that had us on your Spotify Wrapped Podcast section, tag us in your story or post for a shoutout on the show! Thanks to Maya, Em, Carly, Allison and LittleDipperPomskies, for already sharing. For those that don’t follow us on social media @DNATodayPodcast, h…

1
#212 NSGC Recap 2022

1+ y ago

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We are recapping and reflecting on the National Society of Genetic Counselors 41st Annual conference, which was just held in Nashville. Some attendees joined in virtually and others, like myself, joined in person. It was incredible to meet so many of you listeners. I am already looking forward to NSGC 2023 in Chicago in October. If I didn’t get a c…

1
#211 Jorge Contreras on The Genome Defense

1+ y ago

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Our guest in this episode is Jorge Contreras, author of The Genome Defense. In this riveting, behind-the-scenes courtroom drama, a brilliant legal team battles corporate greed and government overreach for the fundamental right to control our genes. We’re giving away 5 copies of The Genome Defense, so be sure to check out our social media accounts f…

1
#210 Reproductive Medicine Family History with Tristan Hardy

1+ y ago

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After two years of virtual NSGC conferences, I can’t wait to see many of you in Nashville next week! Say “hi” if you see me! If you want to be featured in our NSGC recap episodes, let me know. I would love to capture your impression of the conference to feature on the episode. Maybe you will get DNA Today merch in exchange… I will be spending a lot…

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Trisomy 13 Podcasts

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