Explore every episode of the podcast Down Syndrome Center Podcast

Dive into the complete episode list for Down Syndrome Center Podcast. Each episode is cataloged with detailed descriptions, making it easy to find and explore specific topics. Keep track of all episodes from your favorite podcast and never miss a moment of insightful content.

	Title	Pub. Date	Duration
	#197 - National Down Syndrome Congress (NDSC)	13 mars 2025	00:21:53
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.
	#196 - Advocacy 101	27 févr. 2025	00:24:42
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.
	#195 - 2025 Update - Down Syndrome Association of Pittsburgh!	13 févr. 2025	00:15:23
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.
	#194 - Mental Health Therapy in Down Syndrome	23 janv. 2025	00:21:49
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
	#193 - Personalized Medicine in Down syndrome?	09 janv. 2025	00:16:15
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.
	#192 - Year End Guest!	26 déc. 2024	00:06:11
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.
	#191 - Cardiac Surgery	21 nov. 2024	00:23:16
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.
	#190 - Immunizations in Down Syndrome	07 nov. 2024	00:23:38
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.
	#189 - Buddy Up For Life	24 oct. 2024	00:20:18
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.
	#188 - How Does Provider Bias Affect Delivery of the Diagnosis of Ds?	10 oct. 2024	00:22:24
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.
	#187 - Why Have a Down Syndrome Center?	26 sept. 2024	00:20:52
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.
	#186 - Supplements in Down Syndrome - What Do We Know?	12 sept. 2024	00:18:31
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.
	#185 - The Immune System in Down Syndrome	29 août 2024	00:26:35
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.
	#184 - Baby Led Weaning (with Jill Rabin)	15 août 2024	00:24:08
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.
	#183 - Behavioral Support Services (with Dr. Santamaria)	11 juil. 2024	00:22:28
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.
	#182 - Anesthesia in Down Syndrome, Part 2	20 juin 2024	00:30:53
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.
	#181 - Anesthesia in Down syndrome, Part 1	06 juin 2024	00:27:52
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.
	#180 - Sleep Questions!	23 mai 2024	00:22:22
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.
	#179 - Exceptional Families of the Military	09 mai 2024	00:25:25
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.
	#178 - John's Crazy Socks!	18 avr. 2024	00:28:55
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.
	#177 - Weight Loss Medications and Surgeries	04 avr. 2024	00:28:41
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.
	#176 - Happy World Down Syndrome Day 2024!	21 mars 2024	00:26:32
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.
	#175 - Inflammation in Down Syndrome (with Dr. Joaquin Espinosa)	07 mars 2024	00:29:01
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.
	#174 - Dating in Down Syndrome (with Terri Couwenhoven)	22 févr. 2024	00:25:22
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.
	#173 - Sexuality and Down Syndrome (with Terri Couwenhoven)	08 févr. 2024	00:30:41
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.
	#172 - Hearing Health in Down Syndrome (with Dr. Heather Porter)	25 janv. 2024	00:23:18
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.
	#171 - Hearing Health in Down Syndrome (with Dr. Heather Porter)	11 janv. 2024	00:17:27
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.
	#170 - Dementia in Down Syndrome, Part 2 (with Dr. Seth Keller)	28 déc. 2023	00:21:50
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.
	#169 - Dementia in Down Syndrome, Part 1 (with Dr. Seth Keller)	14 déc. 2023	00:22:32
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.
	#168 - Year End Update!	28 nov. 2023	00:13:39
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.
	#167 - Talk Tools (with Heather Vukelich)	16 nov. 2023	00:31:25
Speech language pathologist Heather Vukelich joined the podcast today to inform us about TalkTools and techniques to address feeding and speech clarity in people with Down syndrome. Websites/Resources www.talktools.com www.happykidstherapy.com www.happykidstherapy.com/feeding-class https://www.instagram.com/happykidstherapy/ If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu. If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
	#166 - Gigi's Playhouse (with Nanci Gianni)	02 nov. 2023	00:28:12
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.
	#165 - Friendship Circle (with Rabbi Mordy Rudolph)	19 oct. 2023	00:23:44
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.
	#164 - Black Down Syndrome Association	05 oct. 2023	00:42:25
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.
	#163 - Aging in Down Syndrome (Life Expectancy, Early Aging, Menopause)	21 sept. 2023	00:24:57
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.
	#162 - Is Homeschooling An Option for Children with Ds? (with LaTaasha Byrd)	07 sept. 2023	00:37:07
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
	#161 - Special Olympics	17 août 2023	00:26:02
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.
	#160 - Down Syndrome Regression Disorder (with Dr. Jon Santoro)	03 août 2023	00:24:38
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.
	#159 - Sensory Processing - Part 2 (Sound sensitivity, toothbrushing, haircuts, nail trims)	20 juil. 2023	00:17:42
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.
	#158 - Update on COVID (with Dr. Andy Nowalk)	06 juil. 2023	00:21:07
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.
	#157 - Understanding Grief and Grieving in People with Down Syndrome	22 juin 2023	00:19:09
How do we help people with Down syndrome during times of grief and grieving? Dr. Rose Reif, LCMHC, CRC, BC-TMH and owner of Reif Counseling Services, PLLC joined the podcast today to discuss her perspective. For more information on Dr. Reif, go to https://rosereif.com/about/. For more information on this topic, check out Dr. Reif's book https://www.amazon.com/Helping-Child-syndrome-Understand-Death/dp/B0BXN5TFCC/. Dr. Reif's recommended this resource by Fred Rogers as well https://www.amazon.com/s?k=when+a+pet+dies+by+fred+rogers&crid=2E7G8G1J0JF8M&sprefix=when+a+pet%2Caps%2C96&ref=nb_sb_ss_ts-doa-p_1_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. Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
	#156 - Behavioral Analysis (with Dr. Stacy Taylor)	08 juin 2023	00:33:03
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.
	#155 - Down Syndrome Affiliates in Action	25 mai 2023	00:23:13
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.
	#154 - Bitty and Beau's Coffee Shop	11 mai 2023	00:31:47
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.
	#153 - Improving Tolerance to Device Wearing (hearing aids, glasses, CPAP masks)	27 avr. 2023	00:24:45
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.
	#152 - Addressing Unhealthy Eating Habits (with Shannon Frizzell)	13 avr. 2023	00:17:15
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.
	#151 - A Conversation with Friends - Happy World Down Syndrome Day!	21 mars 2023	00:13:17
In honor of World Down Syndrome Day, enjoy this roundtable coversation recorded between my brother and his friends!
	#150 - How to Address Throwing Behaviors (with Dr. Tarin Santamaria)	01 mars 2023	00:19:06
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.
	#149 - Juvenile Idiopathic Arthritis (with Dr. Jordan Jones)	02 févr. 2023	00:23:01
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.
	#148 - Jack's Basket (with Carissa Carroll)	05 janv. 2023	00:27:27
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.

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