Down Syndrome Center Of Western Pennsylvania Podcast

Dr. Stephanie Meredith from the University of Kentucky joined the podcast today to talk about her recently published studies showing how bias affects how medical providers deliver the diagnosis of Down syndrome.  She also discusses how her findings on how trust impacts the care delivered to people of Black and Hispanic descent. For more information: Resources for new and expectant parents: https://www.lettercase.org Courses for medical providers: https://www.lettercase.org/education/medical-professionals/ PCORI Resources: https://www.lettercase.org/support-for-black-and-hispanic-new-and-expectant-parents/ Artal JM, Randall L, Rubeck S, Allyse M, Michie M, Riggan KA, Meredith S, Skotko BG. Parents of children with Down syndrome reflect on their postnatal diagnoses, 2003-2022. Am J Med Genet A. 2024 Aug;194(8):e63619. doi: 10.1002/ajmg.a.63619. Epub 2024 Apr 15. PMID: 38619097.  https://pubmed.ncbi.nlm.nih.gov/38619097/ Meredith S, Weiss S, Kleinert HL, Tyrrell CA. The impact of implicit and explicit bias about

On this podcast, Dr. Vellody addresses the same question that came in from 2 listeners about the role of a Down Syndrome Center?  Why have one?  Are there things that happen at a Down Syndrome Center that are not easily done in a regular primary care visit?   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.  

Shannon Frizzell, MS, RD, LDN leads our Nutrition team at the Down Syndrome Center of Western PA.  She joins the podcast today to answer a listener question on nutritional supplements in Down syndrome.   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.  

Dr. Dusan Bogunovic is the Director of the Center for Genetic Errors of Immunity at Columbia University Medical Center in New York.  He joined the podcast today to share about the intriguing immune system in people with Down syndrome and their increased risk of inflammation and infection. For more information on Dr. Bogunovic research trial, go to https://www.downsyndromeclinicaltrial.com. If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.    

Jill Rabin joined the podcast today to discuss Baby Led Weaning and what that looks like for someone with Down syndrome.  For more information: Rabin, Jill, and Gill Rapley. Your Baby Can Self-Feed, Too: Adapted Baby-Led Weaning for Children with Developmental Delays or Other Feeding Challenges. The Experiment, 2022. https://theexperimentpublishing.com/catalogs/fall-2022/your-baby-can-self-feed-too/ www.jillrabin.com https://www.instagram.com/jillrabinablw/?igsh=MWd5NTFzZmQ0enNwbw%3D%3D&utm_source=qr   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.  

The Down Syndrome Center of Western Pennsylvania's very own psychologist, Dr. Tarin Santamaria, joined the podcast to help us understand the "alphabet soup" of behavioral support services that are available in the community.

Dr. James Hunt is a pediatric anesthesiologist at Arkansas Children's Hospital.  He joined the podcast to discuss specific issues related to anesthesia in Down syndrome.  This is Part 2 of the podcast.  

Dr. James Hunt is a pediatric anesthesiologist at Arkansas Children's Hospital.  He joined the podcast to discuss specific issues related to anesthesia in Down syndrome.  This is Part 1 of the podcast.  

Dr. Lucy Lubinski is a Sleep Psychologist at Children's Hospital of Pittsburgh.  She joined the podcast today to discuss common sleep related issues in pediatrics and approaches to management. Pediatric Sleep Councilhttps://www.babysleep.com If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.

Rebecca Emerson and Austin Carrigg joined the podcast to talk about Exceptional Families of the Military, a 501 c(3) non-profit that helps families who are enrolled in the Department of Defense Exceptional Family Member Program.  They discussed what to do when a diagnosis of Down syndrome is received while in the military and available supports and resources available to those families. Exceptional Families of the Military https://exceptionalmilitaryfam.com/military-support-groups Down Syndrome Diagnosis Netword Military Families Grouphttps://www.facebook.com/groups/2207125775996497 Military OneSource https://www.militaryonesource.mil/resources/network/efmp-and-me/?gad_source=1&gclid=CjwKCAjwzN-vBhAkEiwAYiO7oJ1rmtUXAt60kSHXpITIbvxuDZlMsP1XGlrY0aU3d2riXvb6HQzNJRoC5-UQAvD_BwE Center for Parent Information and Resourceshttps://www.parentcenterhub.org/find-your-center/ Ketotic Hypoglycemia International Family Support Group https://www.facebook.com/groups/ketotichypoglycemiasupportgroup/   If you would like

John and Mark Cronin joined the podcast today to talk about their world famous sock store called John's Crazy Socks.  Listen to the podcast to find out why their mission is about something so much greater than "just socks."   For more information about John's Crazy Socks (and to buy your own!), visit: https://johnscrazysocks.com   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.

Dr. Vibha Singhal, pediatric endocrinologist, and Dr. Kellen Hayes, bariatric surgeon, joined the podcast to give their thoughts on the latest buzz around weight loss medications and bariatric surgeries.  They also give their thoughts specifically on these treatments/management strategies for people with Down syndrome. If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.  

NDSC Board Member and Self-Advocate Craig Blackburn joined the podcast to share about the amazing work that he is doing.  He and his mother Pat Ehrle shared about their experiences and what World Down Syndrome Day means to them.

Dr. Joaquin Espinosa is the Executive Director of the Linda Crnic Institute for Down Syndrome at the University of Colorado.  He joins the podcast today to discuss his research on inflammation in Down syndrome and how modifications in the immune system can potentially be used in treatment of common disease conditions seen in people with Down syndrome. To learn more about the Human Trisome Project, visit: https://www.trisome.org To learn more about research trials in Down syndrome, visit: https://www.clinicaltrials.gov   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.

Terri Couwenhoven is known internationally for her work as a sex educator specializing in creating programs and resources for people who have intellectual disabilities, their famlies, and the professionals who support them.  She rejoined the podcast this week to talk about dating and Down syndrome.     For more information on Terri, her amazing resources, book her as a speaker for your group, go to:  https://www.terricouwenhoven.com/ Resources discussed on the podcast: Dating in Down Syndrome Books by Terri https://www.terricouwenhoven.com/work Adult Down Syndrome Center (Advocate Medical Group) https://adscresources.advocatehealth.com/search/?keyword=dating&category=Sexual%20Health%20and%20Relationships National Council on Independent Living https://ncil.org/resources/sex-ed-for-individuals-with-i-dd/   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcas

Terri Couwenhoven is known internationally for her work as a sex educator specializing in creating programs and resources for people who have intellectual disabilities, their famlies, and the professionals who support them.  She has been on the podcast before but joins us again to today for updates on the topic of sexuality and Down syndrome.     For more information on Terri, her amazing resources, book her as a speaker for your group, go to:  https://www.terricouwenhoven.com/ Resources discussed on the podcast: https://www.nytimes.com/2022/01/20/well/sustainable-period-products.html Terri's books! https://www.terricouwenhoven.com/work The Healthy Bodies Toolkit https://vkc.vumc.org/HealthyBodies/index.html Planet Puberty https://www.planetpuberty.org.au Amaze https://amaze.org   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://gi

Dr. Heather Porter from Boys Town Research Hospital joined the podcast to discuss hearing health in Down syndrome.  This is part 2 of the 2 part podcast. https://www.boystownhospital.org/services/ear-nose-throat/pediatric-hearing-clinic   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.   

Dr. Heather Porter from Boys Town Research Hospital joined the podcast to discuss hearing health in Down syndrome.  This is part 1 of a 2 part series. https://www.boystownhospital.org/services/ear-nose-throat/pediatric-hearing-clinic   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.   

Dr. Seth Keller concludes our discussion on dementia in Down syndrome with part 2 of this podcast. If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.   

Dr. Seth Keller joined the podcast to share his insights into dementia and Down syndrome.  This is part 1 of a 2 part podcast. If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.