Podcast terbaik Trisomy 13 (2024)

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Ep 214: Anna, The Birthday Girl! (Trisomy 13) 54:09

2M ago54:09

54:09

Published on Anna's 5th birthday, this episode features Megan DeRuiter, mom to Anna who has Trisomy 13. She discusses the confusion of Anna being given a poor prognosis despite presenting well, the impact of her healthcare background on her early journey and what she has learned about the Trisomy 13 community. Extra To Love is a non-profit organiza…

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Ep 213: An Honest Marriage Chat with Matt and Jenn (Trisomy 18 Parents) 40:33

2M ago40:33

40:33

In this episode of Extra To Love: A Trisomy Podcast, host, Jenn, and her husband, Matt, reflect on the impact of parenting a child with Trisomy 18 on their marriage over the past 6 years. They share their personal experience, lessons they've learned, ways they are still trying to grow and more. They also share the unique experience of navigating a …

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Ministry Moment: Faith Is A Command! 7:50

2M ago7:50

7:50

Are belief and faith the same thing? Listen as Julie compares the two, and discusses that God not only wants us to have faith, but commands it! 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 fa…

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Ep 212: Journey For Jazz (Trisomy 18) 1:12:14

3M ago1:12:14

1:12:14

Chelsi, mom of 5 year old Jazz who has Trisomy 18 (Edwards Syndrome), joins Extra To Love: A Trisomy Podcast to share her wisdom and perspectives on how Jazz's life has impacted their family, if this journey is worth it, the importance of connecting with the trisomy community and more. You definitely don't want to miss this episode! Follow Jazz's j…

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Ep 211: All About Communication with Audrey and Olivia! (ST) 50:37

3M ago50:37

50:37

We are joined by Audrey Brock (M.S. CCC-SLP) and Olivia Lane (M.S. CCC-SLP) join us to share all about speech therapy, communication using AAC, and more. Although most people with Trisomy 18 or Trisomy 13 are non-speaking, that does not mean they are non-communicating. Communication can look many different ways, and speech therapists have a wonderf…

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Ministry Moment: Blessed Is The One Who Perseveres 5:27

3M ago5:27

5:27

In this Ministry Moment, Julie shares on resilience and the call to persevere through trials. With an encouraging call to reframe our thinking, let this Ministry Moment give you a new wind to continue to be resilient through the obstacles you are facing. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisom…

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Ep 210: Evie, Held For a While, Loved For a Lifetime (Trisomy 13) 34:30

4M ago34:30

34:30

At Extra To Love, we are firm believers that a child's value is not based on the number of their days here on Earth. Evie, who had Trisomy 13 and lived 56 days, had an impactful, love-filled life. Evie's mom, Emily, shares about how their journey changed her, how she includes Evie in her baby sister's life, and her favorite memories shared with her…

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Ministry Moment: God is Our Strength 6:06

4M ago6:06

6:06

In this Ministry Moment, Julie provides the ever-empowering reminder - If God is for us, who can be against us? In God we are strengthened and equipped to face each challenge, with Jesus - the source of our strength - walking right beside us. Extra To Love is a non-profit organization that aims to improve the lives of people with Trisomy 18 and Tri…

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Ep 209: Physical Therapy is Awesome! With DPTs Kaitlyn and Rianna 59:01

4M ago59:01

59:01

Our guests this week hold special meaning to ETL, as they have been the physical therapy providers for the kids of our ETL team members and have been cheerleaders for them every step of the way. In this episode, Rianna Silverstein, DPT and Kaitlyn Evers, DPT share their perspectives on their experience treating children with trisomy 18, discuss wha…

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Ministry Moment: Created For Community 5:37

4M 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…

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

4M 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…

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Ministry Moment: Gratitude In All Circumstances 7:16

5M 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…

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Ep 207: Let's Talk Home Nursing with Nurse Tomi 1:04:10

5M 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…

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

5M 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…

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

5M 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…

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Ministry Moment: Doing God's Work 6:29

6M 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…

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

6M 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 …

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Ministry Moment: Starting Your Prayer Life 8:12

6M 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…

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

6M 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…

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Ep 203: Siblings of Children with Trisomy 48:38

8M 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…

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

9M 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…

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Ep 201: We are Back! 23:54

10M 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…

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

1y 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…

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

1y 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 …

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

1y 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…

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

1y 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…

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

1y 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…

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

1y 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…

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

1+ y 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…

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Ep 105: Indiana (Trisomy 18) 28:44

1+ y 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…

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Ep 104: Date Night? 56:37

1+ y 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…

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

1+ y 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…

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

1+ y 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…

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#235 Genetic Counseling History: ABGC Formation

1+ y ago

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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…

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#234 Genetic Counseling History: 1st NSGC Conference

1+ y ago

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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…

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

1+ y ago

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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…

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#232 Entrepreneurship in Genetics with Matt Tschirgi

1+ y ago

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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 …

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#231 ChatGPT and AI In Genetics with Daniel Uribe

1+ y ago

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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…

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#230 Cancer Pharmacogenetics with Dr. Jamie Fettig

1+ y ago

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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 …

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#229 Pharmacogenomics with Avni Santani

1+ y ago

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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…

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#228 Trisomy 13 and Trisomy 18 with Divya Ramachandra

1+ y ago

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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…

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

1+ y ago

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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…

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

1+ y ago

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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…

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

1+ y ago

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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…

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

1+ y ago

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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…

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#223 PhenoTips: Rare Disease Diagnosis Workflow

2y ago

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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…

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#222 Wilson’s Disease with Naseem Amin

2y ago

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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 …

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

2y ago

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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…

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#220 Microfluidics with Franz Pruefer

2y ago

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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…

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

2y ago

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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 …

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