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.
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#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 .
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#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.
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#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.
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#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.
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#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.
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#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.
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#169 - Dementia in Down Syndrome, Part 1 (with Dr. Seth Keller)
12/14/2023
#169 - Dementia in Down Syndrome, Part 1 (with Dr. Seth Keller)
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 . 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.
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#168 - Year End Update!
11/28/2023
#168 - Year End Update!
Listen as Dr. Vellody reflects on the history of this podcast, the history of the Down Syndrome Center, and looks towards the future for both! To learn more about the Down Syndrome Center, you can 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 . Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
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#167 - Talk Tools (with Heather Vukelich)
11/16/2023
#167 - Talk Tools (with Heather Vukelich)
Speech language pathologist Heather Vukelich joined the podcast today to inform us about TalkTools and techniques to address feeding and speech clarity in people with Down syndrome. Websites/Resources 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.
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#166 - Gigi's Playhouse (with Nanci Gianni)
11/02/2023
#166 - Gigi's Playhouse (with Nanci Gianni)
Nancy Gianni, Founder and Chief Belief Officer of Gigi's Playhouse, joined the podcast as part of our "Meet The Nationals" series. Gigi's Playhouse provides free educational, therapeutic-based, and career development programs for individuals with Down syndrome, their families, and the community, through a replicable playhouse model. Their mission and purpose is to change the way the world views Down syndrome and to send a global message of acceptance for all. For more information on Gigi's Playhouse: Nancy Gianni's book: 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.
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#165 - Friendship Circle (with Rabbi Mordy Rudolph)
10/19/2023
#165 - Friendship Circle (with Rabbi Mordy Rudolph)
Rabbi Mordy Rudolph joined the podcast to discuss the Friendship Circle of Pittsburgh. This amazing organization was established in 2006 with the intention of creating a more inclusive community. It is a community-based program that brings together people of diverse abilities and interests. Information on the local chapter in Squirrel Hill PA can be found: 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.
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#164 - Black Down Syndrome Association
10/05/2023
#164 - Black Down Syndrome Association
Kelli Caughman and Crystal Lotterberry, founders of the Black Down Syndrome Association joined the podcast today to share their stories and how they led to the creation of this fantastic organization. For more information, go to . Co Founders General : Website: Instagram: @blackdownsyndrome Public Facebook Page: Private Online Support Group for Black Families: Black Down Syndrome Association PO Box 365 Fortville, Indiana 46040 Zeffy Donation: 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.
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#163 - Aging in Down Syndrome (Life Expectancy, Early Aging, Menopause)
09/21/2023
#163 - Aging in Down Syndrome (Life Expectancy, Early Aging, Menopause)
Dr. Brian Chicoine and Dr. Hannah Graham from the Adult Down Syndrome Center with Advocate Health Care in Park Ridge, Illinois joined the podcast today to discuss a listener question on menopause in Down syndrome. While I had these experts on the podcast, we also discussed other aging related topics in Down syndrome. For more information on the Adult Down Syndrome Center, go to: . To access the Down Syndrome Resource Library, go to: If you are a provider looking to discuss a patient with experts in Down syndrome, consider using Project Echo: To view the latest healthcare guidelines for adults with Down syndrome, 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 . Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
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#162 - Is Homeschooling An Option for Children with Ds? (with LaTaasha Byrd)
09/07/2023
#162 - Is Homeschooling An Option for Children with Ds? (with LaTaasha Byrd)
LaTaasha Byrd joined the podcast today to answer listener questions about homeschooling. Is homeschooling a legitimate option for children with Down syndrome. If so, what are some important considerations that may be unique in this population? Countdown to K Countdown Academy Inclusion is for the Included Book
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#161 - Special Olympics
08/17/2023
#161 - Special Olympics
Gary Cimaglia, Special Olympics North America’s Vice President of Sports, joined the podcast today to give a broad overview of the Special Olympics and how you and your loved ones can be involved. For more information, 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 . Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
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#160 - Down Syndrome Regression Disorder (with Dr. Jon Santoro)
08/03/2023
#160 - Down Syndrome Regression Disorder (with Dr. Jon Santoro)
Down Syndrome Regression Disorder (formerly called Unexplained Regression in Down Syndrome or Down Syndrome Disintegrative Disorder) is a diagnosis that has previously been missed or misdiagnosed in people with Down syndrome. It is a topic in high interest amongst researchers in the field, including today's podcast guest Dr. Jon Santoro from Children's Hospital of Los Angeles. Dr. Santoro gave us a review of the topic as well as current research into the diagnosis and treatment of this condition. 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.
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#159 - Sensory Processing - Part 2 (Sound sensitivity, toothbrushing, haircuts, nail trims)
07/20/2023
#159 - Sensory Processing - Part 2 (Sound sensitivity, toothbrushing, haircuts, nail trims)
Dr. Katie Frank from the Adult Down Syndrome Center in Park Ridge, IL joined the podcast to answer listener questions regarding sound sensitivity, toothbrushing, haircuts, and nail trims. So many people with Down syndrome have sensory difficulties with these tasks and Dr. Frank helped explain her approach to these situations. For fantastic caregiver resources on these types of topics, go to: Some examples of equipment discussed on the 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.
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#158 - Update on COVID (with Dr. Andy Nowalk)
07/06/2023
#158 - Update on COVID (with Dr. Andy Nowalk)
The official pandemic status may be gone, but COVID still lingers. Listen as Dr. Andy Nowalk shares with us the latest updates on COVID, including the upcoming COVID vaccine boosters.
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#157 - Understanding Grief and Grieving in People with Down Syndrome
06/22/2023
#157 - Understanding Grief and Grieving in People with Down Syndrome
How do we help people with Down syndrome during times of grief and grieving? Dr. Rose Reif, LCMHC, CRC, BC-TMH and owner of Reif Counseling Services, PLLC joined the podcast today to discuss her perspective. For more information on Dr. Reif, go to . For more information on this topic, check out Dr. Reif's book . Dr. Reif's recommended this resource by Fred Rogers as well 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.
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#156 - Behavioral Analysis (with Dr. Stacy Taylor)
06/08/2023
#156 - Behavioral Analysis (with Dr. Stacy Taylor)
Dr. Stacy Taylor, with Advance Behavior and Analysis, is an expert in behavioral analysis and special interest in patients with Down syndrome, joined the podcast to discuss her approach to behavioral questions that we received from you! We discussed inappropriate word usage, dumping behaviors, and scripting among other topics. For more information on Dr. Taylor's practice, including potentially scheduling a visit with the practice, visit . To find a behavioral analyst near you, 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 . Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
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#155 - Down Syndrome Affiliates in Action
05/25/2023
#155 - Down Syndrome Affiliates in Action
As part of our Meet the Nationals series, Sarah Mulligan, Executive Director of Down Syndrome Affiliates in Action joined the podcast to talk about the great work that this organization does with local affiliates all over the country. For more information on DSAIA, see . 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.
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#154 - Bitty and Beau's Coffee Shop
05/11/2023
#154 - Bitty and Beau's Coffee Shop
Ben Wright, co-creator of Bitty and Beau's Coffee along with his wife Amy Wright, joined the podcast today to discuss the motivation behind these amazing coffee shops! There will be a Bitty and Beau's Coffee Shop opening in Pittsburgh soon so we asked Ben to join us to give us some background on why he is so passionate about these shops (and it's not just the coffee!). 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.
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#153 - Improving Tolerance to Device Wearing (hearing aids, glasses, CPAP masks)
04/27/2023
#153 - Improving Tolerance to Device Wearing (hearing aids, glasses, CPAP masks)
Dr. Lina Patel from the Sie Center in Denver joined the podcast again today. Given that facial sensitivites are very common in people with Down syndrome, tolerance to wearing hearing aids, glasses, CPAP masks, etc. can be a challenge. Dr. Patel addressed a listener question on this topic on today's 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.
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#152 - Addressing Unhealthy Eating Habits (with Shannon Frizzell)
04/13/2023
#152 - Addressing Unhealthy Eating Habits (with Shannon Frizzell)
Unhealthy eating patterns are unfortunately common in people with Down syndrome. On this podcast, dietician Shannon Frizzell joins to discuss a listener question on some engrained eating patterns in their loved one 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 . Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
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#151 - A Conversation with Friends - Happy World Down Syndrome Day!
03/21/2023
#151 - A Conversation with Friends - Happy World Down Syndrome Day!
In honor of World Down Syndrome Day, enjoy this roundtable coversation recorded between my brother and his friends!
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#150 - How to Address Throwing Behaviors (with Dr. Tarin Santamaria)
03/01/2023
#150 - How to Address Throwing Behaviors (with Dr. Tarin Santamaria)
Dr. Santamaria rejoins the podcast to address a listener question on throwing behavior. What's the best approach when your child with Down syndrome has a tendency to throw objects? And how do you keep everyone else safe? :) Join us for a conversation on this specific topic as well as general thoughts on behavior management. And keep those listener questions coming! 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.
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#149 - Juvenile Idiopathic Arthritis (with Dr. Jordan Jones)
02/02/2023
#149 - Juvenile Idiopathic Arthritis (with Dr. Jordan Jones)
Dr. Jordan Jones is an Associate Professor of Pediatrics and Pediatric Rheumatologist from Children's Mercy Hospital in Kansas CIty, MO. Dr. Jones has a special interest in working with children with Down syndrome and has published numerous articles on this topic. He joined the podcast today to discuss a listener-requested topic on juvenile idiopathic arthritis in Down syndrome. For more information on Dr. Jones, please 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 . Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
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#148 - Jack's Basket (with Carissa Carroll)
01/05/2023
#148 - Jack's Basket (with Carissa Carroll)
Carissa Carroll, Founder and Executive Director of Jack's Basket, joined the podcast today to talk about her story and how it influenced her to create Jack's Basket. This organization serves families all over the world, offering a welcome and congratulations to new families wherever they may be. You can find more information about Jack's Basket 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 . Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
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#147 - Forget Me Not - A Powerful Documentary on Inclusive Education
12/15/2022
#147 - Forget Me Not - A Powerful Documentary on Inclusive Education
Award winning Director, Olivier Bernier joined the podcast today to talk about his recently released documentary called Forget Me Not. Part American, part Quebecois, Olivier is also the Co-Founder and Creative Director of the production company, Rota6 Films, specializing in documentary and commercial films. As 3-year-old Emilio prepares to start school, his family finds itself embroiled in a challenge all too common for children with disabilities – to secure the right to an inclusive education. Olivier and his wife Hilda turn the camera on themselves and their child with Down syndrome, as they navigate a byzantine system originally designed to silo children with disabilities. Get more information, including links to the film, at . If there is a topic that you would like us to cover on the podcast, please e-mail me at . If you would like to partner with the work that we are doing at 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.
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#146 - Hirschsprung Disease
12/01/2022
#146 - Hirschsprung Disease
Dr. Kelly Austin, Director of the Colorectal Center for Children at Children's Hospital of Pittsburgh, joined the podcast to discuss Hirschsprung disease. Seen more commonly in people with Down syndrome, listen to learn more about this important condition. Colorectal Center of Children If there is a topic that you would like us to cover on the podcast, please e-mail me at . If you would like to partner with the work that we are doing at 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 . 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.
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