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.

#216 - Neuropsychological and IQ testing (with Dr. Rosemarie Manfredi) 01/08/2026

#216 - Neuropsychological and IQ testing (with Dr. Rosemarie Manfredi) Dr. Rosemarie Manfredi is a licensed psychologist at Neurodevelopmental Assessment and Consulting, LLC. You can find more information about Dr. Manfredi's practice here: AAIDD definition of intellectual disability, which emphasizes comprehensive evaluations to determine treatment and educational planning: Wrightslaw website to help parents understand their rights in the special education process: Wrightslaw also has a specific page on Assessment and Testing, which includes information on some commonly-used tests and other testing information of interest to parents: 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/36098695

#215 - Speech Clarity 12/18/2025

#215 - Speech Clarity Jennifer Gray is a speech language pathologist (SLP) who works at Gray Speak Therapy (). She joined the podcast to talk about the importance of speech clarity and techniques to improve it for people with Down syndrome. /episode/index/show/downsyndromecenter/id/36102490

#214 - Hip Issues in Down syndrome (with Dr. Ricki Koehler) 12/04/2025

#214 - Hip Issues in Down syndrome (with Dr. Ricki Koehler) Dr. Ricki Koehler was the lead author on a recent article looking at Down syndrome and hip dysplasia and dislocations. Dr. Koehler joined the podcast to answer a listener question on the topic. To read the article: 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/38062640

#213 - REACH - Serving Children with Hirschsprung Disease 11/20/2025

#213 - REACH - Serving Children with Hirschsprung Disease Isabelles Schnadig and Ashley Matthews from REACH (Research, Education, Advocacy for Children with Hirschsprung disease) joined the podcast to talk about the supports they can offer for children with Down syndrome and Hirschsprung Disease. For more information about REACH, visit For more supports for Down syndrome and Hirschsprung disease, visit My Little Brother Is A Trooper: The Story of a Child With a Dual Diagnosis: Down Syndrome and Hirschsprung Disease by Isabelle Schnadig can be found at Ashley's rash tips can be found at 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/37089730

#212 - Cholesterol in Down syndrome - Should we worry about it? 11/06/2025

#212 - Cholesterol in Down syndrome - Should we worry about it? Dr. Brian Chicoine from the Adult Down Syndrome Center in Chicago joined the podcast again today, this time to discuss a listener question on cholesterol. There's data that people with Down syndrome do not seem to get cholesterol related plaques on the arteries around the heart. Knowing this, should we be checking cholesterol levels? Is there an association between cholesterol and Alzheimer disease? Listen to find out more! NDSS Care Down Syndrome Adult Down Syndrome Healthcare Guidelines 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/38825690

#211 - What To Know If Your Child Is Admitted To A Hospital 10/23/2025

#211 - What To Know If Your Child Is Admitted To A Hospital Dr. Kristie Marble is a pediatric hospital medicine physician at Children's Mercy Hospital in Kansas City, MO. She joined the podcast to discuss reasons why a child with Down syndrome might be admitted to a hospital and ways to advocate for them to bring them back to health before discharge. 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/36876410

#210 - Hey "Device," Do You Understand Me? 10/09/2025

#210 - Hey "Device," Do You Understand Me? Laura Mattie and Alex Barkhimer from the school of Speech and Hearing Science at the University of Illinois joined the podcast to talk about the exciting Speech Accessibility Project to help Big Tech companies create devices that can understand people with speech differences. To find more about the project, 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 . 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/36877220

#209 - Parent Education & Advocacy Leadership (PEAL) Center 09/25/2025

#209 - Parent Education & Advocacy Leadership (PEAL) Center Meredith Peterson joined the podcast to talk about the Parent Education & Advocacy Leadership (PEAL) Center. Since 2005, the PEAL Center has been committed to serving families and professionals across Pennsylvania. Today PEAL works with families, youth and young adults with disabilities and special health care needs to help them understand their rights and advocate for themselves. Through our unwavering commitment to inclusion and our guiding values, we empower families and individuals to be included in their home schools and access high quality, coordinated physical and behavioral health care. PEAL’s services are provided at no charge to families as they are funded by private donations and federal, state, and private grants. For more information: PEAL Center: CIPIR (Center for Parent Information and Resources) - where to find your state's PTI Upcoming Wrights Law Training on 9/18/25: 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/36877605

#208 - Advocacy Alert! (Part 2) - Medicaid Changes 09/11/2025

#208 - Advocacy Alert! (Part 2) - Medicaid Changes It's tough to keep up with all the changes going on at the Federal level or understand how that might impact people with Down syndrome in our local areas. We were joined on the podcast by two experts in policy and advocacy from the National Down Syndrome Congress (NDSC). Heather Sachs is the Policy & Advocacy Co-Director for the NDSC and Jawanda Mast is the Grassroots Advocacy Manager for the NDSC. On the podcast, we discuss how the Medicaid changes at the federal level will impact those with disabilities at the state and local level. This is Part 2 of a two part series looking at Policy and Advocacy at the Federal level. For more information: National Down Syndrome Congress () Information and application for NDSC's National Down Syndrome Advocacy Coalition Advocacy Training and Resources. Templates, one-pagers, toolkit and presentations. -Changes to Medicaid, Medicare, and Affordable Care Act: -Closer look at work requirements in HR1: -Impact of Medicaid cuts on Home and Community Based waiver Services: -Impact of Medicaid cuts on students and schools: 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/38157795

#207 - Advocacy Alert! (Part 1) - IDEA, Federal Changes, Dept of Education 09/04/2025

#207 - Advocacy Alert! (Part 1) - IDEA, Federal Changes, Dept of Education It's tough to keep up with all the changes going on at the Federal level or understand how that might impact people with Down syndrome in our local areas. We were joined on the podcast by two experts in education policy from the National Down Syndrome Congress (NDSC). Stephanie Smith Lee is the Policy & Advocacy Co-Director for the NDSC and Ricki Sabia is the Senior Education Policy Advisor for the NDSC. On the podcast, we'll discuss the history and current state of the IDEA as well as discuss how the federal changes may impact our loved ones with Down syndrome. This is Part 1 of a two part series looking at Policy and Advocacy at the Federal level. For more information: National Down Syndrome Congress () Information and application for NDSC's National Down Syndrome Advocacy Coalition Why Protecting IDEA and the U.S. Department of Ed is Essential for Students with Disabilities Action Alert about dismantling the U.S. Department of Ed Letter signed by education officials from past Administrations asking Congress Not to Close the Department of Ed, Move Office of Special Education programs, or Block Grant IDEA 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/38021685

Red Down Mexico (English) 08/21/2025

Red Down Mexico (English) Dr. Paola Vidal Rojo from Red Down Mexico joined the podcast to discuss the organization and the work being done in Mexico to provide healthcare for people with Down syndrome. To find out more about this organization, got 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 . 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/36876285

Red Down México (Spanish) 08/21/2025

Red Down México (Spanish) La Dra. Paola Vidal Rojo, de Red Down México, se unió al podcast para hablar sobre la organización y el trabajo que se realiza en México para brindar atención médica a las personas con síndrome de Down. Para obtener más información sobre esta organización, visite https://red-downmexico.org. Si desea sugerir un tema para que lo tratemos en el podcast, envíe un correo electrónico a DownSyndromeCenter@chp.edu. Si desea colaborar con el Centro de Síndrome de Down, incluyendo este podcast, visite https://givetochildrens.org/downsyndromecenter. Agradecemos la generosa donación de Caring for Kids – The Carrie Martin Fund, que financia el equipo de grabación y los costos de alojamiento del podcast. /episode/index/show/downsyndromecenter/id/36876300

#206 - Mental Health in Mosaic Down Syndrome 07/24/2025

#206 - Mental Health in Mosaic Down Syndrome Dr. Ruth Brown-Ennis joined the podcast again, this time to discuss the latest research on mental health issues seen in people with mosaic Down syndrome. Article () Brown RC, D'Aguilar A, Hurshman Q, NailorZee R, York TP, Capone G, Amstadter AB, Jackson-Cook C. Internalizing Psychiatric Symptoms in People With Mosaicism for Trisomy 21. Am J Med Genet B Neuropsychiatr Genet. 2025 Jan 16:e33022. doi: 10.1002/ajmg.b.33022. Epub ahead of print. PMID: 39821956. International Mosaic Down Syndrome Association 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/35463215

#205 - Update on Sleep Apnea 07/10/2025

#205 - Update on Sleep Apnea Dr. Rachel Whelan and Dr. Ryan Soose joined the podcast today to discuss sleep apnea in both children and adults with Down syndrome. The podcast discusses how and when to screen for sleep apnea and management options that currently are in use. For more information on the pediatric hypoglossal nerve stimulator trial discussed on the podcast, 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 . 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/36243760

#204 - Down Syndrome Medical Interest Group (DSMIG) and Project Echo 06/19/2025

#204 - Down Syndrome Medical Interest Group (DSMIG) and Project Echo Dr. Brian Chicoine joined the podcast to talk about the Down Syndrome Medical Interest Group (DSMIG) and Project Echo. For more information on DSMIG: For more information on Project Echo: 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/35462835

#203 - Child Life Specialists 06/05/2025

#203 - Child Life Specialists Child life specialists are specially trained to prepare children and family members for medical experiences and teach techniques to help reduce stress and anxiety. Stephanie Colaberardino, MS, CCLS, CIMI joined the podcast today to talk about how a Child Life Team can be helpful for patients with Down syndrome. Children's Hospital of Pittsburgh Child Life Children's Hospital of Pittsburgh Adaptive Care Team 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/35462965

#202 - Reflections From An Adult Sibling 05/22/2025

#202 - Reflections From An Adult Sibling Author Debbie Miller joined the podcast today to discuss her life experiences with her sibling Rick. Debbie has written a memoir called Raising Ricky which can be found at: (book and audiobook) 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/35381850

#201 - Shoes and Orthotics (with Dr. Sarah Mann) 05/08/2025

#201 - Shoes and Orthotics (with Dr. Sarah Mann) Dr. Sarah Mann joined the podcast today to discuss foot issues in Down syndrome and the role for supportive shoes and orthotics. For more information on the Mann Method Therapy Network: 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/36097375

#200 - The Next Generation! 04/29/2025

#200 - The Next Generation! In honor of the 200th episode of the podcast, three very special guests joined the podcast today to share their memories and the impact that their Uncle Das has had on their lives. /episode/index/show/downsyndromecenter/id/36349045

#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

Down Syndrome Center Podcast

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