This is the podcast series for the Down Syndrome Center of Western Pennsylvania at Children's Hospital of Pittsburgh of UPMC.
Listeners of Down Syndrome Center of Western Pennsylvania Podcast that love the show mention: information, thank, excellent, great.
The Down Syndrome Center of Western Pennsylvania Podcast is a valuable resource for anyone looking for information and support related to Down syndrome and associated conditions. The hosts, particularly Dr. Kishore Vellody and his guests, demonstrate an impressive level of knowledge, compassion, and dedication to helping individuals with Down syndrome and their families. This podcast stands out for addressing a range of topics with depth and nuance, providing listeners with a comprehensive understanding of various conditions and challenges associated with Down syndrome.
One of the best aspects of this podcast is the willingness of the hosts to address listener requests and cover topics that are important to them. The fact that they took the time to discuss Hirschsprung's disease and provide more information about it speaks to their commitment to meeting their audience's needs. It is clear that they genuinely care about spreading awareness, offering support, and providing helpful resources that can make a difference in people's lives.
Additionally, the podcast excels in its ability to educate listeners about different conditions in a compassionate and hopeful manner. The professionals involved in each episode take the time to explain complex concepts in accessible language, highlighting the challenges but also emphasizing potential solutions or strategies for better managing these conditions. This approach not only provides valuable information but also instills a sense of hope and optimism among listeners.
However, one possible improvement for this podcast could be diversifying the range of perspectives represented among guests. While the current experts offer valuable insights, it would be beneficial to have more individuals with lived experiences as guests as well. Including parents or adults with Down syndrome who can share their personal stories, challenges faced, and successes achieved would provide more well-rounded perspectives on various topics.
In conclusion, The Down Syndrome Center of Western Pennsylvania Podcast is an exceptional resource for anyone seeking information about Down syndrome or associated conditions. The hosts' dedication to addressing listener requests with compassion and hope sets this podcast apart from others in its field. With its informative yet uplifting approach, this podcast is a valuable tool for families, caregivers, and individuals with Down syndrome looking to learn and grow.
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 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.
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.
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.
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 Councilhttps://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.
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 Grouphttps://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 Resourceshttps://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.
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. 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.
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.
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/Resourceswww.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.
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/
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
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. 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.
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.
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.
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. 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.
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.
In honor of World Down Syndrome Day, enjoy this roundtable coversation recorded between my brother and his friends!
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