Down Syndrome Center Of Western Pennsylvania Podcast

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://givetochildrens.org/downsyndromecenter. Agradecemos la generosa donación de Caring for Kids – The Carrie Martin Fund, que financia el equipo de grabación y los costos de alojamiento del podcast.

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 donation from Caring for Kids – The Carrie Martin Fund that provides the funding for the podcast recording equipment and hosting costs for this podcast.  

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 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 cost

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 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.

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 Caring for Kids – The Carrie Martin Fund that provides the funding for the podcast recording equipment and hosting costs for this podcast.

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 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.

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 Kids – The Carrie Martin Fund that provides the funding for the podcast recording equipment and hosting costs for this podcast.

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 Kids – The Carrie Martin Fund that provides the funding for the podcast recording equipment and hosting costs for this podcast.

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 hosting costs for this podcast.

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@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 LEGISLATORCongress:  https://www.congress.gov/members/find-your-member HELPFUL NATIONAL ORGANIZATIONSNDSC:  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 w

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. 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  

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.  

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.    

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.