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.

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. 

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. 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. 

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. 

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

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/

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. 

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. 

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. 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. 

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

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. 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. 

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.

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.