Down Syndrome Center Podcast

This podcast contains information for caregivers and providers regarding Down syndrome. Hosted by Dr. Kishore Vellody, Medical Director of the Down Syndrome Center of Western Pennsylvania and former President of the National Down Syndrome Congress.

#199 - Update on Down Syndrome Regression Disorder (DSRD) 04/10/2025

#199 - Update on Down Syndrome Regression Disorder (DSRD) Dr. Robyn Filipink, part of our Down Syndrome Center team, joined the podcast to talk about the latest information on Down Syndrome Regression Disorder. If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . We are thankful for the generous donation from Caring for Kids – The Carrie Martin Fund that provides the funding for the podcast recording equipment and hosting costs for this podcast. /episode/index/show/downsyndromecenter/id/35463070

#198 - Happy World Down Syndrome Day! 03/21/2025

#198 - Happy World Down Syndrome Day! Happy World Down Syndrome Day! Hug that special someone with Down syndrome who you love today! If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . We are thankful for the generous donation from Caring for Kids – The Carrie Martin Fund that provides the funding for the podcast recording equipment and hosting costs for this podcast. /episode/index/show/downsyndromecenter/id/35762905

#197 - National Down Syndrome Congress (NDSC) 03/13/2025

#197 - National Down Syndrome Congress (NDSC) The Executive Director of the National Down Syndrome Congress, Jim Hudson, joined the podcast to talk about the upcoming NDSC Convention and let us know about the important work that the organization is doing. For more information: NDSC NDSC Convention Registration NDSC Policy and Advocacy If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . We are thankful for the generous donation from Caring for Kids – The Carrie Martin Fund that provides the funding for the podcast recording equipment and hosting costs for this podcast. /episode/index/show/downsyndromecenter/id/35652875

#196 - Advocacy 101 02/27/2025

#196 - Advocacy 101 Advocating for your loved one with Down syndrome can sometimes feel overwhelming. Where do you start? How do you do it effectively? Mitch Rothholz and Julie Gerhart-Rothholz joined the podcast today to share their experiences in advocacy, including experiencing their son Evan as he has become a powerful self-advocate himself. FIND YOUR LEGISLATORCongress: HELPFUL NATIONAL ORGANIZATIONSNDSC: NDSC NDAC: NDSS: Global DS Foundation: The ARC: If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . We are thankful for the generous donation from Caring for Kids – The Carrie Martin Fund that provides the funding for the podcast recording equipment and hosting costs for this podcast. /episode/index/show/downsyndromecenter/id/35445130

#195 - 2025 Update - Down Syndrome Association of Pittsburgh! 02/13/2025

#195 - 2025 Update - Down Syndrome Association of Pittsburgh! Cherese Sandrock (Executive Director) and Greg Coni (Board President) of the Down Syndrome Association of Pittsburgh joined the podcast today to let us know about what's coming up for our local Pittsburgh community in 2025! Down Syndrome Association of Pittsburgh (DSAP) E-mail: Phone: If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . We are thankful for the generous donation from Caring for Kids – The Carrie Martin Fund that provides the funding for the podcast recording equipment and the site hosting for this podcast. /episode/index/show/downsyndromecenter/id/35269325

#194 - Mental Health Therapy in Down Syndrome 01/23/2025

#194 - Mental Health Therapy in Down Syndrome Dr. Susan Fawcett, PhD, RSLP is the Director or Therapy, Behaviour, and Family Support at the Down Syndrome Resource Foundation (). Dr. Fawcett joined the podcast to discuss mental health and therapy approaches in people with Down syndrome. For more information: Down Syndrome Resource Foundation Adult DS Center Mental Wellness in Adults with Down Syndrome (book) Down Syndrome Connection of the Bay Resources Social Thinking /episode/index/show/downsyndromecenter/id/33821510

#193 - Personalized Medicine in Down syndrome? 01/09/2025

#193 - Personalized Medicine in Down syndrome? Dr. Joaquin Espinosa of the Linda Crnic Institute joined the podcast again today to answer a listener question on a recent scientific study published in the prestigious journal of Nature. . Listen as he explains what could one day be the future of personalized medicine in Down syndrome. Will we one day be able to reliably predict which conditions a person with Down syndrome may be more likely to have? For more information on the Linda Crnic Institute for Down Syndrome: For more information on the Human Trisome Project: If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . /episode/index/show/downsyndromecenter/id/33588707

#192 - Year End Guest! 12/26/2024

#192 - Year End Guest! To commemorate the year-end of 2024, Liz Sattler joined us on the podcast. Liz is a self-advocate who has worked in our Down Syndrome Center for many years. Liz's position, like all of our roles at the Down Syndrome Center, was made possible through generous philanthropic giving. We are only able to do what we do at our Center because of ongoing support through 1000s of donors over the years. If you would like to partner with the Down Syndrome Center, including this podcast, please visit . If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . /episode/index/show/downsyndromecenter/id/34623705

#191 - Cardiac Surgery 11/21/2024

#191 - Cardiac Surgery Dr. Victor Morell, Chief of the Department of Cardiothoracic Surgery at the Children's Hospital of Pittsburgh joined the podcast to talk about cardiac surgery in patients with Down syndrome. He also discussed the new Heart Center buliding that is being constructed and how that will improve the already amazing cardiac care that children receive. /episode/index/show/downsyndromecenter/id/33204032

#190 - Immunizations in Down Syndrome 11/07/2024

#190 - Immunizations in Down Syndrome Dr. Diane Langkamp is the Director of the Down Syndrome Program at Akron Children's Hospital. She joined the podcast to discuss immunizations in 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 . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . /episode/index/show/downsyndromecenter/id/32558047

#189 - Buddy Up For Life 10/24/2024

#189 - Buddy Up For Life Beth Gibson (Executive Director & Founder) and Allison Davis (Program Director) from Buddy Up For Life joined the podcast today to talk about their amazing programs. For more information: If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . /episode/index/show/downsyndromecenter/id/32557907

#188 - How Does Provider Bias Affect Delivery of the Diagnosis of Ds? 10/10/2024

#188 - How Does Provider Bias Affect Delivery of the Diagnosis of Ds? 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: Courses for medical providers: PCORI Resources: 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. Meredith S, Weiss S, Kleinert HL, Tyrrell CA. The impact of implicit and explicit bias about disabilities on parent experiences and information provided during prenatal screening and testing. Disabil Health J. 2024 Jan;17(1):101514. doi: 10.1016/j.dhjo.2023.101514. Epub 2023 Aug 4. PMID: 37633732. Ijaz MR, Trepanier AM, Kleinert HL, Weiss SM, Meredith SH. Parent-reported genetic counselor adherence to the NSGC practice resource for communicating a potential prenatal diagnosis: Impact on the Down syndrome diagnosis experience. J Genet Couns. 2024 Jul 19. doi: 10.1002/jgc4.1948. Epub ahead of print. PMID: 39031948. If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . /episode/index/show/downsyndromecenter/id/32557757

#187 - Why Have a Down Syndrome Center? 09/26/2024

#187 - Why Have a Down Syndrome Center? 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 . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . /episode/index/show/downsyndromecenter/id/33203802

#186 - Supplements in Down Syndrome - What Do We Know? 09/12/2024

#186 - Supplements in Down Syndrome - What Do We Know? 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 . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . /episode/index/show/downsyndromecenter/id/32557632

#185 - The Immune System in Down Syndrome 08/29/2024

#185 - The Immune System in Down Syndrome 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 . If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . /episode/index/show/downsyndromecenter/id/32557442

#184 - Baby Led Weaning (with Jill Rabin) 08/15/2024

#184 - Baby Led Weaning (with Jill Rabin) 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. If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . /episode/index/show/downsyndromecenter/id/32557202

#183 - Behavioral Support Services (with Dr. Santamaria) 07/11/2024

#183 - Behavioral Support Services (with Dr. Santamaria) 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. /episode/index/show/downsyndromecenter/id/31875532

#182 - Anesthesia in Down Syndrome, Part 2 06/20/2024

#182 - Anesthesia in Down Syndrome, Part 2 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. /episode/index/show/downsyndromecenter/id/30564208

#181 - Anesthesia in Down syndrome, Part 1 06/06/2024

#181 - Anesthesia in Down syndrome, Part 1 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. /episode/index/show/downsyndromecenter/id/30564168

#180 - Sleep Questions! 05/23/2024

#180 - Sleep Questions! 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 Council If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . /episode/index/show/downsyndromecenter/id/30440263

#179 - Exceptional Families of the Military 05/09/2024

#179 - Exceptional Families of the Military 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 Down Syndrome Diagnosis Netword Military Families Group Military OneSource Center for Parent Information and Resources Ketotic Hypoglycemia International Family Support Group If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . /episode/index/show/downsyndromecenter/id/30429798

#178 - John's Crazy Socks! 04/18/2024

#178 - John's Crazy Socks! 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: If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . /episode/index/show/downsyndromecenter/id/29775728

#177 - Weight Loss Medications and Surgeries 04/04/2024

#177 - Weight Loss Medications and Surgeries 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 . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . /episode/index/show/downsyndromecenter/id/30564078

#176 - Happy World Down Syndrome Day 2024! 03/21/2024

#176 - Happy World Down Syndrome Day 2024! 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. /episode/index/show/downsyndromecenter/id/30465628

#175 - Inflammation in Down Syndrome (with Dr. Joaquin Espinosa) 03/07/2024

#175 - Inflammation in Down Syndrome (with Dr. Joaquin Espinosa) 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: To learn more about research trials in Down syndrome, visit: If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . /episode/index/show/downsyndromecenter/id/29774873

#174 - Dating in Down Syndrome (with Terri Couwenhoven) 02/22/2024

#174 - Dating in Down Syndrome (with Terri Couwenhoven) 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: Resources discussed on the podcast: Dating in Down Syndrome Books by Terri Adult Down Syndrome Center (Advocate Medical Group) National Council on Independent Living If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast. /episode/index/show/downsyndromecenter/id/29774723

#173 - Sexuality and Down Syndrome (with Terri Couwenhoven) 02/08/2024

#173 - Sexuality and Down Syndrome (with Terri Couwenhoven) 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: Resources discussed on the podcast: Terri's books! The Healthy Bodies Toolkit Planet Puberty Amaze If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast. /episode/index/show/downsyndromecenter/id/29774558

#172 - Hearing Health in Down Syndrome (with Dr. Heather Porter) 01/25/2024

#172 - Hearing Health in Down Syndrome (with Dr. Heather Porter) 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. If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast. /episode/index/show/downsyndromecenter/id/28812008

#171 - Hearing Health in Down Syndrome (with Dr. Heather Porter) 01/11/2024

#171 - Hearing Health in Down Syndrome (with Dr. Heather Porter) 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. If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast. /episode/index/show/downsyndromecenter/id/28811973

#170 - Dementia in Down Syndrome, Part 2 (with Dr. Seth Keller) 12/28/2023

#170 - Dementia in Down Syndrome, Part 2 (with Dr. Seth Keller) 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 . If you would like to partner with the Down Syndrome Center, including this podcast, please visit . Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast. /episode/index/show/downsyndromecenter/id/28811563

Down Syndrome Center Podcast

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