Down Syndrome Center Podcast

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: https://clinicaltrials.gov/study/NCT04801771?co...

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   DownSyndromeCenter@chp.edu . If you would like to partner with the Down Syndrome Center, including this podcas...

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  https://www.chp.edu/our-services/child-l...

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: https://a.co/d/4ILqLyD (book and audiobook)   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 Cen...

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: https://www.mannmethodpt.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...

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.

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   DownSyndromeCenter@chp.edu . If you would like to partner with the Down Syndrome Center, including this podcast, please visit   https://givetochild...

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   DownSyndromeCenter@chp.edu . If you would like to partner with the Down Syndrome Center, including this podcast, please visit   https://givetochildrens.org/downsyndromecenter . We are thankful for the gener...

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 https://www.ndsccenter.org NDSC Convention Registration https://tools.eventpower.com/reg/index/85y7aP2xy5 NDSC Policy and Advocacy https://www.ndsccenter.org/polit...

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 LEGISLATOR Congress:  https://www.congress.gov/members/find...

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) https://dsapgh.org https://facebook.com/dsapgh E-mail: ​info@dsapgh.org Phone: 412-997-2297   If you would like to suggest a topi...

Dr. Susan Fawcett, PhD, RSLP is the Director or Therapy, Behaviour, and Family Support at the Down Syndrome Resource Foundation ( https://www.dsrf.org/about-us/our-staff/susan-fawcett/ ).  Dr. Fawcett joined the podcast to discuss mental health and therapy approaches in people with Down syndrome. For more information: Down Syndrome Resource Foundation https://www.dsrf.org Adult DS Center https://a...

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.   https://www.nature.com/articles/s41467-024-49781-1 .  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 conditi...

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. I...

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.

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   DownSyndromeCenter@chp.edu . If you would like to partner with the Down Syndrome Center, including this podcast, please visit  ...

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: https://buddyupforlife.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 Cent...

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:...

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 li...

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 t...

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...

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-...

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.