Down Syndrome Center Podcast – Details, episodes & analysis

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.

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.

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 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.

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.