Down Syndrome Center Podcast

Dr. Rosemarie Manfredi is a licensed psychologist at Neurodevelopmental Assessment and Consulting, LLC.  

You can find more information about Dr. Manfredi's practice here:
https://www.neuroassessconsult.com

Jennifer Gray is a speech language pathologist (SLP) who works at Gray Speak Therapy (http://grayspeaktherapy.com).  She joined the podcast to talk about the importance of speech clarity and techniques to improve it for people with Down syndrome.

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: https://pubmed.ncbi.nlm.nih.gov/40433006/

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...

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 https://www.reachhd.org

For more supports for Down syndrome and Hirschsprung disease, visit https://www.reachhd.org/down-syndrome-hirschsprung-disease

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 https://sdppublishingsolutions.com/product/my-little-brother-is-a-trooper/

A...

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
https://careds.org

Adult Down Syndrome Healthcare Guidelines
https://pubmed.ncbi.nlm.nih.gov/33079159/

If you would like...

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 DownSyndromeCenter@chp.edu.

If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.

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 https://speechaccessibilityproject.beckman.illinois.edu.

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, plea...

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...

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...

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...

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://givetochildre...

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 https://red-downmexico.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://givetochildrens.org/downsyndromecenter.

We are thankful for the generous donati...

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 (https://onlinelibrary.wiley.com/doi/10.1002/ajmg.b.33022)
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
https://www.imdsa.org

If you would like to su...

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?cond=Down%20syndrome,%20sleep%20apnea&rank=10

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...

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 podcast, please visit https://givetochildrens.org/downsyndromecenter.

We are thankful for the generous donation from Carin...

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-life/specialist-assistant

Children's Hospital of Pittsburgh Adaptive Care Team
https://www.chp.edu/for-parents/support-services/family-support-services

If you would like to suggest a topic for us to cover on the...

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 Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.

We are thankful for the generous donation from Caring for...

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, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.

We are thankful for the generous donation from Caring for Kid...

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://givetochildrens.org/downsyndromecenter.

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 ho...

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 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.

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/political-advocacy/take-action-stay-informed/

If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@ch...

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: https://www.congress.gov/members/find-your-member

HELPFUL NATIONAL ORGANIZATIONSNDSC: https://www.ndsccenter.org/political-advocacy/take-action-stay-informed/

NDSC NDAC:

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 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. 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://adscresources.advocatehealth.com/resources/?category=Mental%20Health

Mental Wellness in Adults with Down Syndrome (book) 
https://adscresources.advocatehealth.com/mental-wellness-in-adults-with-down-syndrome-2nd-edition/

Down Syndrome Connection of the Bay Resources Duration: 00:21:49

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 conditions a person with Down syndrome may be more likely to have?

For more information on the Linda Crnic Institute for Down Syndrome:
https://medschool.cuanschutz.edu/linda-crnic-institute

For...

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 https://givetochildrens.org/downsyndromecenter.

If you would like to suggest a to...

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 https://givetochildrens.org/downsyndromecenter.

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 Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.

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...

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 Synd...

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 sen...

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 Council
https://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 Group
https://www.facebook.com/groups/2207125775996497

Military OneSource
https://www.militaryonesource.mil/resources/network/efmp-and-me/?g...

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...

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 su...

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 (Advoca...

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...

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...

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...

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. 

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

Thank you to "Caring for Kids" The Carrie Marti...

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
www.talktools.com
www.happykidstherapy.com  
www.happykidstherapy.com/feeding-class 
https://www.instagram.com/happykidstherapy/

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/down...

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:
https://gigisplayhouse.org

Nancy Gianni's book:
https://shopgigisplayhouse.org/shop/generationg-a-true-story-of-miracles-hope-and-unconditional-acceptance/

If you would like to...

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:
https://www.fcpgh.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 Do...

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 https://www.blackdownsyndrome.org/.

Co Founders Kelli.Caughman@blackdownsyndrome.org Crystal.Lotterberry@blackdownsyndrome.org General : info@blackdownsyndrome.org Website: https://urldefense.com/v3/__http://www.blackdownsyndromeassociation.org__;!!NHLzug!Jens2WEhVCCYLfIdP8YfAZZL2e3J9VtxzHLRMGaBEeo4Y8XCzOmQuNNFPsznPPC2ctWNHlhttYiJRULC3ODChWtDt-606QDzbgGnUw$ Instagram: @blackdownsyndrome Public Facebook Page: https://urldefense.com/v3/__https://www.facebook.com/profile.php?id=100085879436043&mibextid=LQQJ4d__;!!NHLzug!Jens2WEhVCCYLfIdP8...

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: https://www.advocatehealth.com/health-services/adult-down-syndrome-center/.

To access the Down Syndrome Resource Library, go to: https://adscresources.advocatehealth.com/

If you are a provider looking to discuss a patient w...

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
https://countdowntok.com

Countdown Academy
https://countdown-academy.teachable.com

Inclusion is for the Included Book
https://countdowntokstore.company.site

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 https://www.specialolympics.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://givetochildrens.org/downsyndromecenter.

Thank you to "Caring for Kids" The Carrie Mart...

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...

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:
https://adscresources.advocatehealth.com/

Some examples of equipment discussed on the podcast:
3 Headed Toothbrush

Weighted Vest

Automatic Nail Trimmer

Hair Clipper

If yo...

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.

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 https://rosereif.com/about/.

For more information on this topic, check out Dr. Reif's book https://www.amazon.com/Helping-Child-syndrome-Understand-Death/dp/B0BXN5TFCC/.

Dr. Reif's recommended this resource by Fred Rogers as well https://www.amazon.com/s?k=when+a+pet+dies+by+fred+rogers&crid=2E7G8G...

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 http://advancebehavior.com/.  

To find a behavioral analyst near you, visit https://www.bacb.com/services/o.php?page=101135.  

If you would like to suggest a topic for us t...

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 https://www.dsaia.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://givetochildrens.org/downsyndromecenter.

Thank you to "...

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 DownSyndromeCenter@chp.edu.

If you would like to pa...

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 DownSyndromeCenter@chp.edu.

If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.

Th...

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 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...

In honor of World Down Syndrome Day, enjoy this roundtable coversation recorded between my brother and his friends!

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 DownSyndromeCenter@chp.edu.

If you would like to partner with the Down Syndrome Center, including this p...

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 https://www.childrensmercy.org/profiles/jordan-t-jones/.  

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 yo...

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 https://www.jacksbasket.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...

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...

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 
https://www.chp.edu/our-services/surgery-pediatric/pediatric-surgery-services-we-offer/colorectal-center-for-children

If there is a topic that you would like us to cover on the podcast, please e-mail me at DownSyndromeCenter@chp.edu.

If you would like to partner with the work that we are doing at the Down Syndrome Center, including this po...

Scott Quaife, NSCA-CPT, Health and Wellness Coordinator with Down Syndrome Innovations in Kansas, joined the podcast to discuss the importance of exercise in Down syndrome and overcoming potential obstacles to reaching exercise goals.

For more in-depth information on this topic, please visit: https://vimeo.com/753072214

Down syndrome innovations
https://kcdsi.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...

Michelle Sie Whitten from the Global Down Syndrome Foundation joined the podcast today as part of our "Meet the Nationals" series.  

For more information on Global Down Syndrome Foundation
https://www.globaldownsyndrome.org

Prenatal & Newborn Pamphlet: https://www.globaldownsyndrome.org/prenatal-testing-pamphlet/

GLOBAL Adult Healthcare Guideline: https://www.globaldownsyndrome.org/medical-care-guidelines-for-adults/

If you have a podcast topic you would like us to address, please send an e-mail to DownSyndromeCenter@chp.edu. 

If you would like to partner with the Down Syndrome Center and the work that we do, including th...

Dr. Anna Esbensen, psychologist with the Thomas Center for Down Syndrome at Cincinnati Children's Hospital, joined the podcast to answer a listener question about psychological issues that are seen in Down syndrome.  

Thomas Center for Down Syndrome
https://www.cincinnatichildrens.org/service/t/down-syndrome/services

Association of University Centers on Disabilities
https://www.aucd.org/directory/directory.cfm?program=UCEDD

The National Association for the Dually Diagnosed (NADD)
http://thenadd.org

Mental Wellness in Adults with Down Syndrome (currently out of print)
https://www.amazon.com/Mental-Wellness-Adults-Down-Syndrome/d...

To celebrate Down Syndrome Awareness Month, representatives from the Down Syndrome Association of Pittsburgh (DSAP) joined the podcast today to reflect on their experiences as parents as well as highlight the ongoing work of DSAP. The highlight event of the year is the Buddy Walk which is coming up on October 23, 2022 at Schenley Plaza on the University of Pittsburgh campus. Helpful websites related to the podcast discussion today:

Kandi Pickard, President and CEO of the National Down Syndrome Society, joined the podcast as part of our series on the national organizations who serve people with Down syndrome.  You can find more information about NDSS here (https://www.ndss.org).  

If you have a podcast topic you would like us to address, please email DownSyndromeCenter@chp.edu.

If you would like to partner with us in the work of the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.  

Thank you to "Caring for Kids" The Carrie Martin Fund for...

Dr. Nowalk joined the podcast again to give us a general COVID update and discuss specifically the new Omicron boosters.

CDC Statement on Omicron Boosters
https://www.cdc.gov/media/releases/2022/s0901-covid-19-booster.html

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 su...

Jordan Kough, Executive Director of the National Down Syndrome Congress, joined the podcast as part of our "Meet the Nationals" series.  To learn more about the NDSC, go to http://ndsccenter.org.

If you have a podcast topic you would like us to address, please send an e-mail to DownSyndromeCenter@chp.edu. 

If you would like to partner with the Down Syndrome Center and the work that we do, including this podcast, please go to http://givetochildrens.org/downsyndromecenter.

Thank you to "Caring for Kids" The Carrie Martin Fund for its support of th...

Antoinette Scaffidi, author of the children's book Not Down, Up Mommy, joined the podcast to talk about the book and her thoughts on the importance of including children with disabilities in children's books.  The book can be found at https://www.amazon.com/Not-Down-Mommy-Antoinette-Scaffidi/

If you have a podcast topic that you would like us to discuss, please reach out at DownSyndromeCenter@chp.edu.

If you would like to partner in the work of the Down Syndrome Center, including this podcast, please go to https://givetochildrens.org/downsyndromecenter.

Thank you to "Caring for Ki...

Speech language pathologist Sheri Rosen and Pediatric Surgeon Dr. Mike Morowitz joined the podcast to discuss swallow studies and gastrostomy tubes.  

If you have an idea for a future podcast, please e-mail us at DownSyndromeCenter@chp.edu.  

If you would like to partner with us in the work of the Down Syndrome Center, including this podcast, please go to https://givetochildrens.org/downsyndromecenter. 

Thank you to "Caring for Kids" The Carrie Martin Fund for its support of the Down Syndrome Center Podcast. 

Shannon Frizzell, registered clinical dietician, joined the podcast today to talk about strategies for healthy weight management in people with Down syndrome.

For more information and resources:
My Plate
https://www.myplate.gov

American Academy of Nutrition and Dietetics
https://www.eatright.org

American Heart Association
https://www.heart.org/en/healthy-living/healthy-eating

American Diabetes Association
https://diabetes.org/healthy-living/recipes-nutrition

If there are any topics that you would like us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu.<...

Dr. Nowalk rejoins the podcast for an update on the COVID pandemic as it relates to people with Down syndrome.  Topics discussed include a general COVID update, COVID vaccine booster doses for children >5 years old, primary COVID vaccination for children

Heather Avis, co-host of The Lucky Few podcast joined our podcast today to talk about her journey and vision to "change the narrative" when it comes to how society views Down syndrome.

To find more information and subscrie to The Lucky Few Podcast, go to https://www.theluckyfewpodcast.com.  

To find more information on The Lucky Few Podcast Foundation, go to https://theluckyfewfoundation.org/.  

If you have podcast topics that you would like us to address, please e-mail me at DownSyndromeCenter@chp.edu.

If you would like to partner with us at...

Rob Snow (creator and founder of The Improvaneers) returns on the podcast to give us an update with how its going on the comedy show, the impacts of COVID, and the vision for the program.  You can get more information on The Improvaneer Method by listening to our prior podcast #61 found at https://downsyndromecenter.libsyn.com/size/5/?search=rob+snow.   To find out if The Improvaneers are coming to your area and how to get involved, please visit https://www.theimprovaneermethod.com/.  

If you have a topic that you would like covered on the podcast, please reach out to me...

Jen Jacob, Founder and Executive Director of the Down Syndrome Diagnosis Network (DSDN) joined the podcast to talk about their work in the area of information and resource sharing for families. You can get connected to DSDN by going to https://www.dsdiagnosisnetwork.org.  

If you have any topics that you would like us to cover on the podcast, please reach out to me via e-mail at downsyndromecenter@chp.edu.

If you would like to partner with the work of the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. 

Stephanie Thompson from the National Down Syndrome Adoption Network (NDSAN) joined the podcast today to talk about their work in domestic adoptions for children with Ds in the U.S.   National Down Syndrome Adoption Network
http://www.ndsan.org

Please e-mail us with any topics you would like us to address on the podcast at DownSyndromeCenter@chp.edu.

To partner with our work, including this podcast, please visit: https://www.givetochildrens.org/downsyndromecenter.  

Dr. Marilyn Bull, lead author of the 2022 American Academy of Pediatrics Health Supervision Guidelines for Children and Adolescents with Down Syndrome, joins the podcast today to discuss the latest guideline update released earlier this week!  Dr. Bull is  the Morris Green Professor of Pediatrics at Indiana University School of Medicine, Department of Pediatrics, in the Division of Developmental Pediatrics.  She is the Director of the Down Syndrome Program at Riley Hospital for Children.

The medical guidelines can be found here: https://publications.aap.org/pediatrics/article/doi/10.1542/peds.2022-057010/186778/Health-Supervision-for-Children-and-Adolescents.  

If there are topics that you...

Dr. Andrew McCormick, Director of the Transition Program at the Down Syndrome Center, joined the podcast to discuss supplemental security income (SSI) and waivers. 

If there are any topics you would like us to discuss on the podcast, please e-mail us at DownSyndromeCenter@chp.edu.

To partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter

Dr. Andrew McCormick, Director of the Transition Program at the Down Syndrome Center, joined the podcast to discuss the difference between power of attorney and guardianship. 

If there are any topics you would like us to discuss on the podcast, please e-mail us at DownSyndromeCenter@chp.edu.

To partner with the Down Syndrome Center, including this podcast, please visit  https://www.givetochildrens.org/downsyndromecenter

In honor of World Down Syndrome Day, I have chosen to re-release my favorite podcast episode with 3 very special guests!  Enjoy!

If there are any topics you would like us to discuss on the podcast, please e-mail us at DownSyndromeCenter@chp.edu.

If you would like to partner with us, including this podcast, please visit https://www.givetochildrens.org/downsyndromecenter

Friend of the podcast, Dr. Andy Nowalk rejoins the podcast to give us his thoughts on the COVID pandemic.  Questions surrounding the current status of Omicron, need for masking, vaccine timing for younger children are all addressed on today's podcast.

If there are any topics that you would like us to discuss on the podcast, please e-mail us at DownSyndromeCenter@chp.edu.  

If you would like to partner with us, including this podcast, please visit https://www.givetochildrens.org/downsyndromecenter.

The National Down Syndrome Congress (NDSC) Convention is back in person this summer, June 23-26, 2022, in New Orleans, Louisiana!  Dr. Vellody was joined by NDSC representatives Tamara Pursley (Programs and Partnerships Director) and Jordan Kough (Executive Director) to discuss what we can expect at this year's NDSC Convention.  Registration is open now.  Go to https://www.ndsccenter.org/annual-convention/register-now/ to reserve your spot today!

If you have topics that you would like us to cover on the podcast, please send a message to us and DownSyndromeCenter@chp.edu.  We read every message and many of our...

Singer and songwriter Jesse Norell joined Dr. Vellody on the podcast to share about his passion for music and how his new album tells about his journey with his daughter.

And be sure to check out this news story on the album:
https://minnesota.cbslocal.com/2022/01/20/aorta-borealis-jesse-norell-down-syndrome/

Jesse Norell – Aorta Borealis Links:

Website: www.jessenorell.com

The Lucky Few Music Video: https://youtu.be/ywpoLXqU5TI

Together Lyric Video: https://youtu.be/fnVlO-lEdkA

Pre-save Link (Spotify and iTunes): https://distrokid.com/hyperfollow/jessenorell/aorta-borealis

CD...

Dr. Vellody was joined by Sue Buckley on the podcast to discuss education in Down syndrome, specifically discussing speech, reading, and math skills.  Sue Buckley is a leading expert in education and development for young people with Down syndrome. Sue began research examining early reading instruction for children with Down syndrome in 1980 and founded Down Syndrome Education International in 1986. Her research and contributions to the lives of young people with Down syndrome has been widely recognized through numerous awards.

Down Syndrome Education International
Down Syndrome Education International (dseinternational.org)

DSEI/NDSS Guidelines for Inclusive E...

Dr. Vellody and Dr. Nowalk discuss the latest on the COVID-19 Omicron variant and then answer listener questions on the COVID vaccine.

Please consider supporting the work of the Down Syndrome Center, including this podcast, by visiting https://www.givetochildrens.org/downsyndromecenter. 

ID specialist and friend of the podcast, Dr. Andy Nowalk, joins the podcast to discuss the latest on COVID, including the Omicron variant.

Please consider supporting the work of the Down Syndrome Center of Western Pennsylvania at https://givetochildrens.org/downsyndromecenter. 

Dr. Peter Bulova joins the podcast today to discuss myths and facts about Alzheimer disease in Down syndrome.  

Adult Down Syndrome Center
Adult Down Syndrome Center of Western Pennsylvania | UPMC

Please consider partnering in the work of the Down Syndrome Center, including this podcast, by going to http://www.givetochildrens.org/downsyndromecenter.  Thank you!

Tom Sannicandro joined the podcast today to share his expertise on college options available for people with Down syndrome.

Think College
Home | Think College

Special Needs Trusts Online
Special Needs Trust and Estate Plans to Guarantee Your Child's Future (specialneedstrustsonline.com)

Partner with Us!
http://www.givetochildrens.org/downsyndromecenter