Down Syndrome Center Podcast (Kishore Vellody, MD)

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 support of the Down Syndrome Center Podcast. 

In our ongoing goal to keep you up-to-date with the latest changes in the COVID-19 pandemic, Dr. Nowalk joined the podcast again today to discuss COVID vaccination in children with Down syndrome down to 12 years old.  Dr. Nowalk also addressed the latest CDC guidelines on vaccinated individuals being mask-free in public settings.

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

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. 

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 podcasts come from your suggestions!

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

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 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.

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

Helen Milligan, physical therapist with the Trisomy 21 Program at Children's Hospital of Philadelphia, joined the podcast to answer a listener question regarding physical therapy in the school aged child.

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. Vellody is joined by Sarah Hill who is the Convention Director for the National Down Syndrome Congress.  The 2021 NDSC Convention is a one-of-a-kind opportunity for families and self-advocates to get information on Down syndrome.  This year's NDSC Convention will be virtual and offer loads of opportunities for attendees that are discussed on this podcast.  To learn more or to register for the NDSC Convention, go to https://www.ndsccenter.org/annual-convention/.

If you have a topic that you would like covered on the podcast, please reach out to me via e-mail at DownSyndromeCenter@chp.edu.

Please consider partnering with us in what we do at the Down Syndrome Center, including this podcast, by going to 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. 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 Down Syndrome Center Podcast. 

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 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. 

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.

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 with experts in Down syndrome, consider using Project Echo: https://www.dsmig-usa.org/Project-Echo

To view the latest healthcare guidelines for adults with Down syndrome, go to:  https://jamanetwork.com/journals/jama/fullarticle/277190

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. 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. 

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-your-member

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

NDSC NDAC:  https://www.ndsccenter.org/political-advocacy/national-down-syndrome-advocacy-coalition/ndac-faq/

NDSS:           https://ndss.org/

                       https://ndss.org/ndss-advocacy-alerts

Global DS Foundation:  https://www.globaldownsyndrome.org/global-advocacy-elongating-life-improving-health/

The ARC:  https://p2a.co/lRPDZ5C

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.

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 the Down Syndrome Center, including supporting this podcast, please go to https://givetochildrens.org/downsyndromecenter.   

Join us as we remember the history of this podcast and hear beautiful music and testimonials shared by our listeners.  And take a listen to this song by Troy Griffith.

Troy Griffith "Ten by Twelve" Music Video 
https://youtu.be/vNA4X9d7yT8

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.

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. 

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 Preorder: www.jessenorell.com/store

Website: www.jessenorell.com

Instagram: https://www.instagram.com/jessenorell/

Facebook: https://www.facebook.com/JesseNorellMusic

YouTube: https://www.youtube.com/channel/UCzTAL1WlRn7ovkPN__WPxbw

TikTok: https://www.tiktok.com/@jessenorell

Patreon: www.patreon.com/jessenorell

Twitter: https://twitter.com/JesseNorell

Spotify: https://open.spotify.com/artist/3habatC4YQIR3elUirJ1J8

Apple Music: https://music.apple.com/us/artist/jesse-norell/1578944024

Please reach out to us at DownSyndromeCenter@chp.edu with any podcast ideas.  Please also consider partnering with us by going to http://givetochildrens.org/downsyndromecenter.

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 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. 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

Mental Wellness in Adults with Down Syndrome (Book)
Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges - Woodbine House

If People with Down Syndrome Ruled the World (Essay)
National Association for Down Syndrome | If People with Down Syndrome Ruled the World (nads.org)

If you have benefitted from this podcast, please consider partnering in the work of the Down Syndrome Center at: http://www.givetochildrens.org/downsyndrome.

Dr. Katie Frank, PhD, OTR/L, joined the podcast today to talk about sensory processing difficulties in people with Ds and therapeutic approaches.

Resources:
http://adscresources.advocatehealth.com

Mental wellness in Ds book
Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges: Dennis McGuire, Brian Chicoine: 9781606132852: Amazon.com: Books

Out of Sync Child Series
The Out-of-Sync Child Series (3 books) Kindle Edition (amazon.com)

Sensational Kids Lucy Miller
Amazon.com : sensational child

STAR Institute
Sensory Processing - STAR Institute (sensoryhealth.org)

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 Martin Fund for its support of the Down Syndrome Center Podcast. 

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 https://givetochildrens.org/downsyndromecenter.

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

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

Dr. Ruth Brown, psychologist from Virginia Commonwealth University, joined the podcast to discuss preliminary data from her study on the psychological impact of the COVID pandemic in people with Ds.  If you would like to add to this data set, please consider taking the survey at http://tiny.cc/DSFAM_VCU.  

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. 

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!
https://www.terricouwenhoven.com/work

The Healthy Bodies Toolkit
https://vkc.vumc.org/HealthyBodies/index.html

Planet Puberty
https://www.planetpuberty.org.au

Amaze
https://amaze.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 Martin Fund for its support of the Down Syndrome Center Podcast. 

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.

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

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 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.

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:

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
https://padlet.com/DSCBA/mental-health-professional-s-tools-supports-ottzudfzmka3q8n7

Social Thinking 
https://www.socialthinking.com/search?searchTerm=gremlin

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 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 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. 

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 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. 

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.

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

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 topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu.

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 its support of the Down Syndrome Center Podcast. 

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/dp/1890627658/ref=sr_1_3?crid=2ANS38WEA9XWV&keywords=mental+health+down+syndrome&qid=1662478738&sprefix=%2Caps%2C61&sr=8-3

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

If you would like to partner with us at 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. Vellody was joined today by Jawanda and Rachel Mast who came to speak about the importance of national level policy and advocacy.  They also discussed the National Down Syndrome Congress' Ally for Advocacy campaign, and how we can get involved.

https://www.ndsccenter.org/support-get-involved/campaign/

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.

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 “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast. 

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.

Listen as Dr. Vellody answers yet another listener question, this time discussing orthodontic care with Dr. Lindsay Schuster.  

Dr. Lindsay Schuster, DMD, MS - Pittsburgh, PA - Orthodontics and Dentofacial Orthopedics - Book Appointment (upmc.com)

Selective (or "Picky") eaters are common in Pediatrics.  Many parents receive advice on how to manage but what does the data show?  Ann Meyers from Clinical Nutrition and Sarah Rossman from Occupational Therapy joined the podcast today to discuss this very important topic.

Resources
Tips for Feeding Picky Eaters - HealthyChildren.org

Child of Mine: Feeding with Love and Good Sense, Revised and Updated Edition: Satter, Ellyn: 8601419522477: Amazon.com: Books

Fearless Feeding: How to Raise Healthy Eaters From High Chair to High School: Jacobsen, Maryann, Castle, Jill: 9781732866201: Amazon.com: Books

Join Us!
If you would like to partner in the work of the Down Syndrome Center, please visit http://www.givetochildrens.org/downsyndrome.  Thank you!

Podcast photo credit: Getty Images

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. 

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 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. 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.  

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 (Advocate Medical Group)
https://adscresources.advocatehealth.com/search/?keyword=dating&category=Sexual%20Health%20and%20Relationships

National Council on Independent Living
https://ncil.org/resources/sex-ed-for-individuals-with-i-dd/

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. 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 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. 

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!Jens2WEhVCCYLfIdP8YfAZZL2e3J9VtxzHLRMGaBEeo4Y8XCzOmQuNNFPsznPPC2ctWNHlhttYiJRULC3ODChWtDt-606QBgGl_ZPQ$


Private Online Support Group for Black Families:
https://urldefense.com/v3/__https://m.facebook.com/groups/bdsafamily/?ref=share&mibextid=S66gvF__;!!NHLzug!Jens2WEhVCCYLfIdP8YfAZZL2e3J9VtxzHLRMGaBEeo4Y8XCzOmQuNNFPsznPPC2ctWNHlhttYiJRULC3ODChWtDt-606QA_0quPvg$

Black Down Syndrome Association
PO Box 365
Fortville, Indiana 46040

Zeffy Donation:
https://urldefense.com/v3/__https://www.zeffy.com/en-US/donation-form/dabaf1dd-803c-4686-8cce-de687a744f7f?fbclid=IwAR2UrDxPS0AySPI_a5NYLt0CnlsY4AXUvewzjq8kXnccpx1wrskxdjrfjAk&mibextid=Zxz2cZ__;!!NHLzug!Jens2WEhVCCYLfIdP8YfAZZL2e3J9VtxzHLRMGaBEeo4Y8XCzOmQuNNFPsznPPC2ctWNHlhttYiJRULC3ODChWtDt-606QC5bneb7Q$

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. 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 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. 

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 podcast, please visit https://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 would like us to cover on the podcast, please reach out to me at DownSyndromeCenter@chp.edu.  

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

Dr. Andy Nowalk joins the podcast again today to discuss the latest news in COVID as it relates to people with Down syndrome.  The podcast highlights the release of the COVID vaccine for 5-11 year olds and discusses booster doses for people with Ds over 18 years old.  

You can partner with us in our service to the community, including this podcast, by going to http://www.givetochildrens.org/downsyndromecenter

Dr. Vellody was joined by Lauren Costabile, founder of Hearts of Joy International.  Listen and learn about the work that this amazing organization is doing to bring hope to children with Down syndrome with congenital heart defects.

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 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. 

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.

Erica Balint, outreach coordinator for The Alliance for Infants and Toddlers, Inc., joined the podcast today to discuss Early Intervention Services for young children.  What are early intervention services and how might they benefit children with Down syndrome?  Listen to find out!

For more information on Early Intervention Services in Pennsylvania, go to:
Early Intervention (pa.gov)

The Alliance for Infants and Toddlers
HOME | The Alliance (afit.org)

To partner in the efforts of the Down Syndrome Center:
Down Syndrome Center is fundraising for Children's Hospital of Pittsburgh Foundation (justgiving.com)

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 https://www.forgetmenotdocumentary.com/.  

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 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. 

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 Syndrome Center Podcast. 

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.

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@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.

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/?gad_source=1&gclid=CjwKCAjwzN-vBhAkEiwAYiO7oJ1rmtUXAt60kSHXpITIbvxuDZlMsP1XGlrY0aU3d2riXvb6HQzNJRoC5-UQAvD_BwE

Center for Parent Information and Resources
https://www.parentcenterhub.org/find-your-center/

Ketotic Hypoglycemia International Family Support Group
https://www.facebook.com/groups/ketotichypoglycemiasupportgroup/

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.

In honor of World Down Syndrome Day, we had some VERY special guests including my brother and parents!  Listen in as they discuss their experiences 46 years ago this month and how they compare to today.  

Dr. Tarin Santamaria, PsyD, NCSP, is the clinical psychologist for our Down Syndrome Center of Western Pennsylvania.  She joined the podcast today to discuss how to assess and approach behaviors in school-aged children with Down syndrome.

Please consider partnering in the work of the Down Syndrome Center by visiting http://www.givetochildrens.org/downsyndrome 

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, Michie M, Riggan KA, Meredith S, Skotko BG. Parents of children with Down syndrome reflect on their postnatal diagnoses, 2003-2022. Am J Med Genet A. 2024 Aug;194(8):e63619. doi: 10.1002/ajmg.a.63619. Epub 2024 Apr 15. PMID: 38619097.  https://pubmed.ncbi.nlm.nih.gov/38619097/

Meredith S, Weiss S, Kleinert HL, Tyrrell CA. The impact of implicit and explicit bias about disabilities on parent experiences and information provided during prenatal screening and testing. Disabil Health J. 2024 Jan;17(1):101514. doi: 10.1016/j.dhjo.2023.101514. Epub 2023 Aug 4. PMID: 37633732. https://pubmed.ncbi.nlm.nih.gov/37633732/

Ijaz MR, Trepanier AM, Kleinert HL, Weiss SM, Meredith SH. Parent-reported genetic counselor adherence to the NSGC practice resource for communicating a potential prenatal diagnosis: Impact on the Down syndrome diagnosis experience. J Genet Couns. 2024 Jul 19. doi: 10.1002/jgc4.1948. Epub ahead of print. PMID: 39031948. https://pubmed.ncbi.nlm.nih.gov/39031948/

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. 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 <5 years old.

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

If you would like to join us in the endeavors of the Down Syndrome Center, including this podcast, please consider visiting https://givetochildrens.org/downsyndromecenter.  

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

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 Education
Inclusive Education Guidelines - NDSS

If you have benefitted from these podcasts and would like to partner with us, please visit https://www.givetochildrens.org/downsyndromecenter

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 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.

If you would like to join 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 its support of the Down Syndrome Center Podcast. 

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 more information on the Human Trisome Project:
https://www.trisome.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. 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.  

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 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 the site hosting for this podcast.

Dr. Stephanie Santoro with the Mass General Down Syndrome Program joined the podcast to discuss a relatively newly recognized condition called by several names including Unexplained Regression in Down Syndrome (URDS), Down Syndrome Disintegrative Disorder (DSDD), or Down Syndrome Regression Disorder (DSRD).  Dr. Santoro will discuss the signs of the condition and the treatment options currently being found to be helpful in the latest research.

More Information
https://www.nature.com/articles/s41436-019-0706-8

Does My Loved One with Down Syndrome Have This Condition?  Check Out This Regression Checklist
https://static-content.springer.com/esm/art%3A10.1038%2Fs41436-019-0706-8/MediaObjects/41436_2019_706_MOESM2_ESM.docx

Find a Regional Down Syndrome Center Near You
Down Syndrome Clinic Listing | National Down Syndrome Congress (ndsccenter.org)

Dr. Nowalk joined to talk about the Delta variant outbreak and the potential impact for people with Down syndrome.

Pittsburgh Vaccine Trials Unit
https://covid19research.pitt.edu/pvtu

CDC COVID Data
https://www.cdc.gov/coronavirus/2019-ncov/index.html

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 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. 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!

Dr. Vellody was joined by NDSC Senior Education Policy Advisor Ricki Sabia to discuss topics surrounding Education in people with Down syndrome.  Ricki shared her extensive expertise in this area as well as her personal experiences as a mother navigating the educational landscape.

Ricki Sabia | National Down Syndrome Congress (ndsccenter.org)

TIES Center
Home | TIES Center

CAST: Universal Design for Learning
CAST: About Universal Design for Learning

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. Nowalk joined the podcast to discuss return to school for 2021 and ways that it looks different than even last year.  

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 the Down Syndrome Center Podcast. 

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.

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/

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.

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

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 Martin Fund for its support of the Down Syndrome Center Podcast. 

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. 

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

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 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. Marilyn Bull, lead author of the Down Syndrome Healthcare Guidelines, joined the podcast today to discuss the guideline process, hint at the upcoming revised healthcare guideline, and specifically comment on atlanto-axial instability (AAI).  

For parents/caregivers:
Children with Down Syndrome: Health Care Information for Families - HealthyChildren.org

For healthcare professionals:
Health Supervision for Children With Down Syndrome | American Academy of Pediatrics (aappublications.org)

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 Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast. 

Dr. Meredith Wright Whittaker, PhD, joined the podcast today to share her personal experiences and literature review on pain perception and expression in people with Down syndrome.  

For more information, please see the article discussed:
Pain perception in people with Down syndrome: a synthesis of clinical and experimental research (nih.gov)