Down Syndrome Center Podcast: Recent Episodes
Kishore Vellody, MD
This podcast contains information for caregivers and providers regarding Down syndrome. Hosted by Dr. Kishore Vellody, Medical Director of the Down Syndrome Center of Western Pennsylvania and former President of the National Down Syndrome Congress.
Sarah Bookout is a Bilingual Speech Language Pathologist at GraySpeak Therapy. She attended the University of Texas at Austin where she received her bachelor's degree in communication sciences and disorders in 2018 and her master's degree from the University of Northern Colorado in 2020. Her career involves helping those with Down syndrome achieve speech clarity and independence. She has discovered a passion for working with teens and adults with moderate to severe speech and language disorders and uses techniques to improve speech clarity that prepare her clients for improved social skills that enable them to build relationships, pursue jobs, and establish personal interests. Her clients practice functional communication and life skills by targeting executive functioning, short term/working memory, and motor planning. She has a certification in LSVT (Lee Silverman Voice Training) LOUD and uses the program with children, teens, and adults to increase speech intelligibility, sentence length, and vocal confidence through "being loud". Her goal is to help children, teens, and adults with Down Syndrome become independent by using their voice.
https://gigisplayhouse.org/ https://www.lsvtglobal.com/ https://www.connectedspeech.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. Jaclyn Ford is a Research Assistant Professor in the Cognitive and Affective Neuroscience Laboratory (https://Bclearningmemory.com) in the Department of Psychology and Neuroscience at Boston College. Her research examines the effects of emotion and social relevance on memory retrieval processes, focusing on how individual differences in retrieval goals and context may modulate these effects. She utilizes behavioral and neuroimaging methods to characterize these changes in an attempt to better support memory retrieval in individuals with memory impairments.
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 National Down Syndrome Congress (NDSC) is having a Policy Summit September 29-30, 2026 at the Omni Shoreham Hotel and Capitol Hill in Washington DC. And YOU are invited to be there! NDSC Policy Team members Heather Sachs, Jawanda Mast, and Adrian Forsythe joined the podcast today to talk about this amazing event.
For more details on the Summit, go to https://ndsccenter.org/policy/ndsc-down-syndrome-policy-summit/.
To join the National Down Syndrome Advocacy Coalition (NDAC), go to https://ndsccenter.org/policy/national-down-syndrome-advocacy-coalition-ndac/.
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.
Drs. Jay Nair and Helen Milligan are both doctors of Physical Therapy at Thomas Jefferson University. They joined us on the podcast today to talk about the concept of a Central Neural Drive and how this impacts people with Down syndrome. They are conducting a study on this topic and are looking for participants. For more information on the study, contact Dana R. Johnsn at nairlab@jefferson.edu, 215-326-9153.
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.
Tracy Pellegrino is a social worker and Program Coordinator for the SMILE Stella Tremonti DS Clinic with Advent Health in Orlando, Florida. She joined the podcast to talk about the often neglected topic of grief in caregivers of 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.
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 along with 2 of her coaches (Coach Helen and Coach Hannah) to discuss their perspectives on scoliosis, hip issues, knee issues, and feet issues in Down syndrome.
Resources SuggestedNDSS CARE-DS (https://careds.org)
Adult Down Syndrome Center (https://adscresources.advocatehealth.com/)
Adult Healthcare Guidelines (https://www.globaldownsyndrome.org/medical-care-guidelines-for-adults/)
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.
There have been many recent changes to the U.S. dietary guidelines. Shannon Frizzell, the dietician for the Down Syndrome Center of Western Pennyslvania, joined the podcast to discuss the impact 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.
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.
It is so difficult these days to tell the difference between evidence based science v. conjecture. Frequently, there are many claims that people can make that are not necessarily backed in scientific fact. The use of leucovorin to address symptoms in autism as well as in Down syndrome has been advocated by some groups. Dr. Lauren Gist and Dr. Robyn Filipink joined the podcast today to address this important topic.
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.
There have been many recent changes to the recommended vaccination schedule in the U.S. Friend of the podcast, Dr. Andrew Nowalk, returns to the podcast to talk about emerging infectious diseases as well as how these recent guideline changes may impact directly 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.
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. Thessa Hilgenkamp Associate Professor in Physical Therapy at the University of Nevada, Las Vegas, joined the podcast today to talk about the unique nature of exercise in people with Down syndrome.
RESOURCES ACSM Guidelines for Exercise Testing and Prescription, Chapter 11 Intellectual Disability and Down syndrome
Development of a Physical Therapy-Based Exercise Program for Adults with Down Syndrome: https://pmc.ncbi.nlm.nih.gov/articles/PMC9960831/
Exercise program: https://www.mannmethodpt.com/uploads/5/0/1/2/50127693/012026_mmpt_table_2_with_images.pdf or https://www.mdpi.com/article/10.3390/ijerph20043667/s1
The International Summit on Health Benefits of Physical Fitness for People With Down Syndrome: Current Science, Gaps, Priorities, and Research Opportunities: https://pubmed.ncbi.nlm.nih.gov/40977151/
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.
Today's podcast features 3 amazing guests with professional and/or personal experience in working with children with Down syndrome and Central Auditory Processing Disorder (CAPD) and/or Cortical Visual Impairment (CVI).
Maurice Belote has decades of expertise in the field of Deafblindness. Belote is a Deafblind specialist, Co-chair of the National Coalition on Deafblindness, adjunct faculty for two teacher training programs, and retired Project Coordinator for California Deafblind Services.
lse Willems is the Senior Director of the CVI Center at Perkins School for the Blind. She has worked at Perkins since 2010, working with students with visual impairments, dual sensory loss, and multiple disabilities, as both a Teacher of Students with Visual Impairments (TVI) and a Teacher of the Deafblind.
Jennifer Saenz, DO, MPH, a primary care physician and parent of a child with dual processing challenges and Down syndrome.
Suggested Resources:
https://www.perkins.org/cvi-now/
https://makeiteasiertosee.co.uk/
Article (available for purchase): Facilitating Listening Skills in Children who are Visually Impaired with Additional Disabilities of Deafblindness
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.
Kandi Pickard (CEO of the National Down Syndrome Society) and Dr. Brian Chicoine (Advocate Medical Group - Adult Down Syndrome Center) joined the podcast to discuss CARE Down Syndrome, a clinical education hub for healthcare professionals. It can be difficult for a busy primary care clinician to be fully up to date in the care of people with Down syndrome. This free resource exists to help educate practitioners on the common issues encountered in Down syndrome.
For more information on CARE Down Syndrome, go to https://careds.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.
Kaye Baumgardner, M.S., CCC-SLP, CLC is a speech therapist with expertise in Orofacial Myofunctional Disorders (OMD). She has had extensive training and years of experience evaluating and working with infants and children who have muscle-based and sensory-based feeding disorders. She joined the podcast today to answer a listener question about an infant with parental concern for drooling and tongue protrusion. For more information on her practice, go to https://www.minnetonkatherapy.com/kaye-b/
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. Michael Puente is a pediatric ophthalmologist at Children's Hospital Colorado. He works with young children, teens, and adults with Down syndrome in his practice. He joined the podcast to discuss common vision issues 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.
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. Rosemarie Manfredi is a licensed psychologist at Neurodevelopmental Assessment and Consulting, LLC.
You can find more information about Dr. Manfredi's practice here: https://www.neuroassessconsult.com
AAIDD definition of intellectual disability, which emphasizes comprehensive evaluations to determine treatment and educational planning: https://www.aaidd.org/intellectual-disability/definition Wrightslaw website to help parents understand their rights in the special education process: https://www.wrightslaw.com Wrightslaw also has a specific page on Assessment and Testing, which includes information on some commonly-used tests and other testing information of interest to parents: https://www.wrightslaw.com/info/test.index.htm 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.
Jennifer Gray is a speech language pathologist (SLP) who works at Gray Speak Therapy (http://grayspeaktherapy.com). She joined the podcast to talk about the importance of speech clarity and techniques to improve it for people with Down syndrome.
Dr. Ricki Koehler was the lead author on a recent article looking at Down syndrome and hip dysplasia and dislocations. Dr. Koehler joined the podcast to answer a listener question on the topic.
To read the article: https://pubmed.ncbi.nlm.nih.gov/40433006/
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.
Isabelles Schnadig and Ashley Matthews from REACH (Research, Education, Advocacy for Children with Hirschsprung disease) joined the podcast to talk about the supports they can offer for children with Down syndrome and Hirschsprung Disease.
For more information about REACH, visit https://www.reachhd.org
For more supports for Down syndrome and Hirschsprung disease, visit https://www.reachhd.org/down-syndrome-hirschsprung-disease
My Little Brother Is A Trooper: The Story of a Child With a Dual Diagnosis: Down Syndrome and Hirschsprung Disease by Isabelle Schnadig can be found at https://sdppublishingsolutions.com/product/my-little-brother-is-a-trooper/
Ashley's rash tips can be found at https://somaticmagicmama.com/2025/05/27/rash-tips-for-hirschsprungs-disease/
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 from the Adult Down Syndrome Center in Chicago joined the podcast again today, this time to discuss a listener question on cholesterol. There's data that people with Down syndrome do not seem to get cholesterol related plaques on the arteries around the heart. Knowing this, should we be checking cholesterol levels? Is there an association between cholesterol and Alzheimer disease? Listen to find out more!
NDSS Care Down Syndrome https://careds.org
Adult Down Syndrome Healthcare Guidelines https://pubmed.ncbi.nlm.nih.gov/33079159/
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. Kristie Marble is a pediatric hospital medicine physician at Children's Mercy Hospital in Kansas City, MO. She joined the podcast to discuss reasons why a child with Down syndrome might be admitted to a hospital and ways to advocate for them to bring them back to health before discharge.
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.
Laura Mattie and Alex Barkhimer from the school of Speech and Hearing Science at the University of Illinois joined the podcast to talk about the exciting Speech Accessibility Project to help Big Tech companies create devices that can understand people with speech differences. To find more about the project, go to https://speechaccessibilityproject.beckman.illinois.edu.
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.
Meredith Peterson joined the podcast to talk about the Parent Education & Advocacy Leadership (PEAL) Center. Since 2005, the PEAL Center has been committed to serving families and professionals across Pennsylvania. Today PEAL works with families, youth and young adults with disabilities and special health care needs to help them understand their rights and advocate for themselves. Through our unwavering commitment to inclusion and our guiding values, we empower families and individuals to be included in their home schools and access high quality, coordinated physical and behavioral health care. PEAL’s services are provided at no charge to families as they are funded by private donations and federal, state, and private grants.
For more information: PEAL Center: https://www.pealcenter.org/
CIPIR (Center for Parent Information and Resources) https://www.parentcenterhub.org/ - where to find your state's PTI Upcoming Wrights Law Training on 9/18/25: https://www.tfaforms.com/5171156?tfa_2400=PEAL 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.
It's tough to keep up with all the changes going on at the Federal level or understand how that might impact people with Down syndrome in our local areas. We were joined on the podcast by two experts in policy and advocacy from the National Down Syndrome Congress (NDSC). Heather Sachs is the Policy & Advocacy Co-Director for the NDSC and Jawanda Mast is the Grassroots Advocacy Manager for the NDSC. On the podcast, we discuss how the Medicaid changes at the federal level will impact those with disabilities at the state and local level. This is Part 2 of a two part series looking at Policy and Advocacy at the Federal level.
For more information:
National Down Syndrome Congress (https://www.ndsccenter.org)
Information and application for NDSC's National Down Syndrome Advocacy Coalition https://ndsccenter.org/policy/national-down-syndrome-advocacy-coalition-ndac/about-ndac.html
Advocacy Training and Resources. Templates, one-pagers, toolkit and presentations. https://ndsccenter.org/policy/training-resources.html
-Changes to Medicaid, Medicare, and Affordable Care Act: https://publichealth.jhu.edu/2025/the-changes-coming-to-the-aca-medicaid-and-medicare -Closer look at work requirements in HR1: https://www.kff.org/medicaid/a-closer-look-at-the-work-requirement-provisions-in-the-2025-federal-budget-reconciliation-law -Impact of Medicaid cuts on Home and Community Based waiver Services: https://www.healthaffairs.org/content/forefront/history-repeats-faced-medicaid-cuts-states-reduced-support-older-adults-and-disabled -Impact of Medicaid cuts on students and schools: https://healthyschoolscampaign.org/dev/wp-content/uploads/2025/03/How-Medicaid-Cuts-Will-Harm-Students-Schools.pdf 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.
It's tough to keep up with all the changes going on at the Federal level or understand how that might impact people with Down syndrome in our local areas. We were joined on the podcast by two experts in education policy from the National Down Syndrome Congress (NDSC). Stephanie Smith Lee is the Policy & Advocacy Co-Director for the NDSC and Ricki Sabia is the Senior Education Policy Advisor for the NDSC. On the podcast, we'll discuss the history and current state of the IDEA as well as discuss how the federal changes may impact our loved ones with Down syndrome. This is Part 1 of a two part series looking at Policy and Advocacy at the Federal level.
For more information:
National Down Syndrome Congress (https://www.ndsccenter.org)
Information and application for NDSC's National Down Syndrome Advocacy Coalition https://ndsccenter.org/policy/national-down-syndrome-advocacy-coalition-ndac/about-ndac.html
Why Protecting IDEA and the U.S. Department of Ed is Essential for Students with Disabilities https://ndsccenter.org/file_download/c0680d5a-fbe5-4b87-806b-93f110b3c320
Action Alert about dismantling the U.S. Department of Ed https://www.votervoice.net/mobile/NDSCCenter/Campaigns/123043/Respond
Letter signed by education officials from past Administrations asking Congress Not to Close the Department of Ed, Move Office of Special Education programs, or Block Grant IDEA https://ndsccenter.org/letter-to-congress/
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. 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.
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. 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 costs for this podcast.
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 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/
If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu.
If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.
Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
Rabbi Mordy Rudolph joined the podcast to discuss the Friendship Circle of Pittsburgh. This amazing organization was established in 2006 with the intention of creating a more inclusive community. It is a community-based program that brings together people of diverse abilities and interests.
Information on the local chapter in Squirrel Hill PA can be found: https://www.fcpgh.org
If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu.
If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.
Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
Kelli Caughman and Crystal Lotterberry, founders of the Black Down Syndrome Association joined the podcast today to share their stories and how they led to the creation of this fantastic organization. For more information, go to https://www.blackdownsyndrome.org/.
Co Founders Kelli.Caughman@blackdownsyndrome.org Crystal.Lotterberry@blackdownsyndrome.org General : info@blackdownsyndrome.org Website: https://urldefense.com/v3/__http://www.blackdownsyndromeassociation.org__;!!NHLzug!Jens2WEhVCCYLfIdP8YfAZZL2e3J9VtxzHLRMGaBEeo4Y8XCzOmQuNNFPsznPPC2ctWNHlhttYiJRULC3ODChWtDt-606QDzbgGnUw$ Instagram: @blackdownsyndrome Public Facebook Page: https://urldefense.com/v3/__https://www.facebook.com/profile.php?id=100085879436043&mibextid=LQQJ4d__;!!NHLzug!Jens2WEhVCCYLfIdP8YfAZZL2e3J9VtxzHLRMGaBEeo4Y8XCzOmQuNNFPsznPPC2ctWNHlhttYiJRULC3ODChWtDt-606QBgGl_ZPQ$ Private Online Support Group for Black Families: https://urldefense.com/v3/__https://m.facebook.com/groups/bdsafamily/?ref=share&mibextid=S66gvF__;!!NHLzug!Jens2WEhVCCYLfIdP8YfAZZL2e3J9VtxzHLRMGaBEeo4Y8XCzOmQuNNFPsznPPC2ctWNHlhttYiJRULC3ODChWtDt-606QA_0quPvg$ Black Down Syndrome Association PO Box 365 Fortville, Indiana 46040 Zeffy Donation: https://urldefense.com/v3/__https://www.zeffy.com/en-US/donation-form/dabaf1dd-803c-4686-8cce-de687a744f7f?fbclid=IwAR2UrDxPS0AySPI_a5NYLt0CnlsY4AXUvewzjq8kXnccpx1wrskxdjrfjAk&mibextid=Zxz2cZ__;!!NHLzug!Jens2WEhVCCYLfIdP8YfAZZL2e3J9VtxzHLRMGaBEeo4Y8XCzOmQuNNFPsznPPC2ctWNHlhttYiJRULC3ODChWtDt-606QC5bneb7Q$
If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu.
If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.
Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
Dr. Brian Chicoine and Dr. Hannah Graham from the Adult Down Syndrome Center with Advocate Health Care in Park Ridge, Illinois joined the podcast today to discuss a listener question on menopause in Down syndrome. While I had these experts on the podcast, we also discussed other aging related topics in Down syndrome.
For more information on the Adult Down Syndrome Center, go to: https://www.advocatehealth.com/health-services/adult-down-syndrome-center/.
To access the Down Syndrome Resource Library, go to: https://adscresources.advocatehealth.com/
If you are a provider looking to discuss a patient with experts in Down syndrome, consider using Project Echo: https://www.dsmig-usa.org/Project-Echo
To view the latest healthcare guidelines for adults with Down syndrome, go to: https://jamanetwork.com/journals/jama/fullarticle/277190
If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu.
If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.
Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
LaTaasha Byrd joined the podcast today to answer listener questions about homeschooling. Is homeschooling a legitimate option for children with Down syndrome. If so, what are some important considerations that may be unique in this population?
Countdown to K https://countdowntok.com
Countdown Academy https://countdown-academy.teachable.com
Inclusion is for the Included Book https://countdowntokstore.company.site
Gary Cimaglia, Special Olympics North America’s Vice President of Sports, joined the podcast today to give a broad overview of the Special Olympics and how you and your loved ones can be involved. For more information, go to https://www.specialolympics.org.
If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu.
If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.
Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
Down Syndrome Regression Disorder (formerly called Unexplained Regression in Down Syndrome or Down Syndrome Disintegrative Disorder) is a diagnosis that has previously been missed or misdiagnosed in people with Down syndrome. It is a topic in high interest amongst researchers in the field, including today's podcast guest Dr. Jon Santoro from Children's Hospital of Los Angeles. Dr. Santoro gave us a review of the topic as well as current research into the diagnosis and treatment of this condition.
If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu.
If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.
Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
Dr. Katie Frank from the Adult Down Syndrome Center in Park Ridge, IL joined the podcast to answer listener questions regarding sound sensitivity, toothbrushing, haircuts, and nail trims. So many people with Down syndrome have sensory difficulties with these tasks and Dr. Frank helped explain her approach to these situations.
For fantastic caregiver resources on these types of topics, go to:
https://adscresources.advocatehealth.com/
Some examples of equipment discussed on the podcast:
3 Headed Toothbrush
Weighted Vest
Automatic Nail Trimmer
Hair Clipper
If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu.
If you would like to partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.
Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
The official pandemic status may be gone, but COVID still lingers. Listen as Dr. Andy Nowalk shares with us the latest updates on COVID, including the upcoming COVID vaccine boosters.
How do we help people with Down syndrome during times of grief and grieving? Dr. Rose Reif, LCMHC, CRC, BC-TMH and owner of Reif Counseling Services, PLLC joined the podcast today to discuss her perspective.
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!
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.
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.
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.
Award winning Director, Olivier Bernier joined the podcast today to talk about his recently released documentary called Forget Me Not. Part American, part Quebecois, Olivier is also the Co-Founder and Creative Director of the production company, Rota6 Films, specializing in documentary and commercial films. As 3-year-old Emilio prepares to start school, his family finds itself embroiled in a challenge all too common for children with disabilities – to secure the right to an inclusive education. Olivier and his wife Hilda turn the camera on themselves and their child with Down syndrome, as they navigate a byzantine system originally designed to silo children with disabilities.
Get more information, including links to the film, at https://www.forgetmenotdocumentary.com/.
If there is a topic that you would like us to cover on the podcast, please e-mail me at DownSyndromeCenter@chp.edu.
If you would like to partner with the work that we are doing at 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. Kelly Austin, Director of the Colorectal Center for Children at Children's Hospital of Pittsburgh, joined the podcast to discuss Hirschsprung disease. Seen more commonly in people with Down syndrome, listen to learn more about this important condition.
Colorectal Center of Children
https://www.chp.edu/our-services/surgery-pediatric/pediatric-surgery-services-we-offer/colorectal-center-for-children
If there is a topic that you would like us to cover on the podcast, please e-mail me at DownSyndromeCenter@chp.edu.
If you would like to partner with the work that we are doing at 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.
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.
Scott Quaife, NSCA-CPT, Health and Wellness Coordinator with Down Syndrome Innovations in Kansas, joined the podcast to discuss the importance of exercise in Down syndrome and overcoming potential obstacles to reaching exercise goals.
For more in-depth information on this topic, please visit: https://vimeo.com/753072214
Down syndrome innovations
https://kcdsi.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.
Michelle Sie Whitten from the Global Down Syndrome Foundation joined the podcast today as part of our "Meet the Nationals" series.
For more information on Global Down Syndrome Foundation
https://www.globaldownsyndrome.org
Prenatal & Newborn Pamphlet: https://www.globaldownsyndrome.org/prenatal-testing-pamphlet/
GLOBAL Adult Healthcare Guideline: https://www.globaldownsyndrome.org/medical-care-guidelines-for-adults/
If you have a podcast topic you would like us to address, please send an e-mail to DownSyndromeCenter@chp.edu.
If you would like to partner with the Down Syndrome Center and the work that we do, including this podcast, please go to https://givetochildrens.org/downsyndromecenter.
Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
Michelle Sie Whitten from the Global Down Syndrome Foundation joined the podcast today as part of our "Meet the Nationals" series.
For more information on Global Down Syndrome Foundation
https://www.globaldownsyndrome.org
Prenatal & Newborn Pamphlet: https://www.globaldownsyndrome.org/prenatal-testing-pamphlet/
GLOBAL Adult Healthcare Guideline: https://www.globaldownsyndrome.org/medical-care-guidelines-for-adults/
If you have a podcast topic you would like us to address, please send an e-mail to DownSyndromeCenter@chp.edu.
If you would like to partner with the Down Syndrome Center and the work that we do, including this podcast, please go to https://givetochildrens.org/downsyndromecenter.
Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
Dr. Anna Esbensen, psychologist with the Thomas Center for Down Syndrome at Cincinnati Children's Hospital, joined the podcast to answer a listener question about psychological issues that are seen in Down syndrome.
Thomas Center for Down Syndrome
https://www.cincinnatichildrens.org/service/t/down-syndrome/services
Association of University Centers on Disabilities
https://www.aucd.org/directory/directory.cfm?program=UCEDD
The National Association for the Dually Diagnosed (NADD)
http://thenadd.org
Mental Wellness in Adults with Down Syndrome (currently out of print)
https://www.amazon.com/Mental-Wellness-Adults-Down-Syndrome/dp/1890627658/ref=sr_1_3?crid=2ANS38WEA9XWV&keywords=mental+health+down+syndrome&qid=1662478738&sprefix=%2Caps%2C61&sr=8-3
If you have a question that you would like us to address on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu.
If you would like to partner with us at 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.
To celebrate Down Syndrome Awareness Month, representatives from the Down Syndrome Association of Pittsburgh (DSAP) joined the podcast today to reflect on their experiences as parents as well as highlight the ongoing work of DSAP. The highlight event of the year is the Buddy Walk which is coming up on October 23, 2022 at Schenley Plaza on the University of Pittsburgh campus.
Helpful websites related to the podcast discussion today:
- DSAP: https://www.dsapgh.org/ or call/text us 4125659936
- Pittsburgh Buddy Walk: https://www.ds-stride.org/pghbuddywalk
- First Call Program: https://www.dsapgh.org/first-call or call/text us 4125524972
- FB: https://www.facebook.com/dsapgh
- IG: https://www.instagram.com/dsapgh
- LinkedIn: https://www.linkedin.com/company/down-syndrome-association-of-pittsburgh
- Twitter: https://twitter.com/dsapittsburgh
- Shannons blog: https://www.thislifewegot.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.
Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
Kandi Pickard, President and CEO of the National Down Syndrome Society, joined the podcast as part of our series on the national organizations who serve people with Down syndrome. You can find more information about NDSS here (https://www.ndss.org).
If you have a podcast topic you would like us to address, please email DownSyndromeCenter@chp.edu.
If you would like to partner with us in the work of 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.
Kandi Pickard, President and CEO of the National Down Syndrome Society, joined the podcast as part of our series on the national organizations who serve people with Down syndrome. You can find more information about NDSS here (https://www.ndss.org).
If you have a podcast topic you would like us to address, please email DownSyndromeCenter@chp.edu.
If you would like to partner with us in the work of 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. Nowalk joined the podcast again to give us a general COVID update and discuss specifically the new Omicron boosters.
CDC Statement on Omicron Boosters
https://www.cdc.gov/media/releases/2022/s0901-covid-19-booster.html
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. Nowalk joined the podcast again to give us a general COVID update and discuss specifically the new Omicron boosters.
CDC Statement on Omicron Boosters
https://www.cdc.gov/media/releases/2022/s0901-covid-19-booster.html
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.
Jordan Kough, Executive Director of the National Down Syndrome Congress, joined the podcast as part of our "Meet the Nationals" series. To learn more about the NDSC, go to http://ndsccenter.org.
If you have a podcast topic you would like us to address, please send an e-mail to DownSyndromeCenter@chp.edu.
If you would like to partner with the Down Syndrome Center and the work that we do, including this podcast, please go to http://givetochildrens.org/downsyndromecenter.
Antoinette Scaffidi, author of the children's book Not Down, Up Mommy, joined the podcast to talk about the book and her thoughts on the importance of including children with disabilities in children's books. The book can be found at https://www.amazon.com/Not-Down-Mommy-Antoinette-Scaffidi/
If you have a podcast topic that you would like us to discuss, please reach out at DownSyndromeCenter@chp.edu.
If you would like to partner in the work of the Down Syndrome Center, including this podcast, please go to https://givetochildrens.org/downsyndromecenter.
Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
Antoinette Scaffidi, author of the children's book Not Down, Up Mommy, joined the podcast to talk about the book and her thoughts on the importance of including children with disabilities in children's books. The book can be found at https://www.amazon.com/Not-Down-Mommy-Antoinette-Scaffidi/
If you have a podcast topic that you would like us to discuss, please reach out at DownSyndromeCenter@chp.edu.
If you would like to partner in the work of the Down Syndrome Center, including this podcast, please go to 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 Sheri Rosen and Pediatric Surgeon Dr. Mike Moritz joined the podcast to discuss swallow studies and gastrostomy tubes.
If you have an idea for a future podcast, please e-mail us at DownSyndromeCenter@chp.edu.
If you would like to partner with us in the work of the Down Syndrome Center, including this podcast, please go to https://givetochildrens.org/downsyndromecenter.
Thank you to “Caring for Kids” The Carrie Martin Fund for its support of the Down Syndrome Center Podcast.
Shannon Frizzell, registered clinical dietician, joined the podcast today to talk about strategies for healthy weight management in people with Down syndrome.
For more information and resources:
My Plate
https://www.myplate.gov
American Academy of Nutrition and Dietetics
https://www.eatright.org
American Heart Association
https://www.heart.org/en/healthy-living/healthy-eating
American Diabetes Association
https://diabetes.org/healthy-living/recipes-nutrition
If there are any topics that you would like us to cover on the podcast, please send an e-mail to DownSyndromeCenter@chp.edu.
If you would like to join us in the work of 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. Nowalk rejoins the podcast for an update on the COVID pandemic as it relates to people with Down syndrome. Topics discussed include a general COVID update, COVID vaccine booster doses for children >5 years old, primary COVID vaccination for children <5 years old.
If you have a topic that you would like us to discuss on a future podcast, please reach out to DownSyndromeCenter@chp.edu.
If you would like to join us in the endeavors of the Down Syndrome Center, including this podcast, please consider visiting https://givetochildrens.org/downsyndromecenter.
Heather Avis, co-host of The Lucky Few podcast joined our podcast today to talk about her journey and vision to "change the narrative" when it comes to how society views Down syndrome.
To find more information and subscrie to The Lucky Few Podcast, go to https://www.theluckyfewpodcast.com.
To find more information on The Lucky Few Podcast Foundation, go to https://theluckyfewfoundation.org/.
If you have podcast topics that you would like us to address, please e-mail me at DownSyndromeCenter@chp.edu.
If you would like to partner with us at the Down Syndrome Center, including supporting this podcast, please go to https://givetochildrens.org/downsyndromecenter.
Rob Snow (creator and founder of The Improvaneers) returns on the podcast to give us an update with how its going on the comedy show, the impacts of COVID, and the vision for the program. You can get more information on The Improvaneer Method by listening to our prior podcast #61 found at https://downsyndromecenter.libsyn.com/size/5/?search=rob+snow. To find out if The Improvaneers are coming to your area and how to get involved, please visit https://www.theimprovaneermethod.com/. If you have a topic that you would like covered on the podcast, please reach out to me via e-mail at DownSyndromeCenter@chp.edu.
Please consider partnering with us in what we do at the Down Syndrome Center, including this podcast, by going to https://givetochildrens.org/downsyndromecenter.
Jen Jacob, Founder and Executive Director of the Down Syndrome Diagnosis Network (DSDN) joined the podcast to talk about their work in the area of information and resource sharing for families. You can get connected to DSDN by going to https://www.dsdiagnosisnetwork.org. If you have any topics that you would like us to cover on the podcast, please reach out to me via e-mail at downsyndromecenter@chp.edu.
If you would like to partner with the work of the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.
Stephanie Thompson from the National Down Syndrome Adoption Network (NDSAN) joined the podcast today to talk about their work in domestic adoptions for children with Ds in the U.S. National Down Syndrome Adoption Network
http://www.ndsan.org Please e-mail us with any topics you would like us to address on the podcast at DownSyndromeCenter@chp.edu.
To partner with our work, including this podcast, please visit: https://www.givetochildrens.org/downsyndromecenter.
Dr. Marilyn Bull, lead author of the 2022 American Academy of Pediatrics Health Supervision Guidelines for Children and Adolescents with Down Syndrome, joins the podcast today to discuss the latest guideline update released earlier this week! Dr. Bull is the Morris Green Professor of Pediatrics at Indiana University School of Medicine, Department of Pediatrics, in the Division of Developmental Pediatrics. She is the Director of the Down Syndrome Program at Riley Hospital for Children.
The medical guidelines can be found here: https://publications.aap.org/pediatrics/article/doi/10.1542/peds.2022-057010/186778/Health-Supervision-for-Children-and-Adolescents.
If there are topics that you would like us to cover on the podcast, please reach out to me at DownSyndromeCenter@chp.edu.
If you would like to partner with us in the work that we are doing at the Down Syndrome Center, including this podcast, please go to https://givetochildrens.org/downsyndromecenter.
Dr. Andrew McCormick, Director of the Transition Program at the Down Syndrome Center, joined the podcast to discuss supplemental security income (SSI) and waivers. If there are any topics you would like us to discuss on the podcast, please e-mail us at DownSyndromeCenter@chp.edu.
To partner with the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter
Dr. Andrew McCormick, Director of the Transition Program at the Down Syndrome Center, joined the podcast to discuss the difference between power of attorney and guardianship.
If there are any topics you would like us to discuss on the podcast, please e-mail us at DownSyndromeCenter@chp.edu.
To partner with the Down Syndrome Center, including this podcast, please visit https://www.givetochildrens.org/downsyndromecenter
In honor of World Down Syndrome Day, I have chosen to re-release my favorite podcast episode with 3 very special guests! Enjoy!
If there are any topics you would like us to discuss on the podcast, please e-mail us at DownSyndromeCenter@chp.edu.
If you would like to partner with us, including this podcast, please visit https://www.givetochildrens.org/downsyndromecenter
Friend of the podcast, Dr. Andy Nowalk rejoins the podcast to give us his thoughts on the COVID pandemic. Questions surrounding the current status of Omicron, need for masking, vaccine timing for younger children are all addressed on today's podcast.
If there are any topics that you would like us to discuss on the podcast, please e-mail us at DownSyndromeCenter@chp.edu.
If you would like to partner with us, including this podcast, please visit https://www.givetochildrens.org/downsyndromecenter.
The National Down Syndrome Congress (NDSC) Convention is back in person this summer, June 23-26, 2022, in New Orleans, Louisiana! Dr. Vellody was joined by NDSC representatives Tamara Pursley (Programs and Partnerships Director) and Jordan Kough (Executive Director) to discuss what we can expect at this year's NDSC Convention. Registration is open now. Go to https://www.ndsccenter.org/annual-convention/register-now/ to reserve your spot today!
If you have topics that you would like us to cover on the podcast, please send a message to us and DownSyndromeCenter@chp.edu. We read every message and many of our podcasts come from your suggestions!
If you would like to partner with us at the Down Syndrome Center, including this podcast, please visit https://givetochildrens.org/downsyndromecenter.
Singer and songwriter Jesse Norell joined Dr. Vellody on the podcast to share about his passion for music and how his new album tells about his journey with his daughter.
And be sure to check out this news story on the album:
https://minnesota.cbslocal.com/2022/01/20/aorta-borealis-jesse-norell-down-syndrome/
Jesse Norell – Aorta Borealis Links: Website: www.jessenorell.com
The Lucky Few Music Video: https://youtu.be/ywpoLXqU5TI
Together Lyric Video: https://youtu.be/fnVlO-lEdkA
Pre-save Link (Spotify and iTunes): https://distrokid.com/hyperfollow/jessenorell/aorta-borealis
CD Preorder: www.jessenorell.com/store
Website: www.jessenorell.com
Instagram: https://www.instagram.com/jessenorell/
Facebook: https://www.facebook.com/JesseNorellMusic
YouTube: https://www.youtube.com/channel/UCzTAL1WlRn7ovkPN__WPxbw
TikTok: https://www.tiktok.com/@jessenorell
Patreon: www.patreon.com/jessenorell
Twitter: https://twitter.com/JesseNorell
Spotify: https://open.spotify.com/artist/3habatC4YQIR3elUirJ1J8
Apple Music: https://music.apple.com/us/artist/jesse-norell/1578944024
Please reach out to us at DownSyndromeCenter@chp.edu with any podcast ideas. Please also consider partnering with us by going to http://givetochildrens.org/downsyndromecenter.
Dr. Vellody was joined by Sue Buckley on the podcast to discuss education in Down syndrome, specifically discussing speech, reading, and math skills. Sue Buckley is a leading expert in education and development for young people with Down syndrome. Sue began research examining early reading instruction for children with Down syndrome in 1980 and founded Down Syndrome Education International in 1986. Her research and contributions to the lives of young people with Down syndrome has been widely recognized through numerous awards.
Down Syndrome Education International
Down Syndrome Education International (dseinternational.org)
DSEI/NDSS Guidelines for Inclusive Education
Inclusive Education Guidelines - NDSS
If you have benefitted from these podcasts and would like to partner with us, please visit https://www.givetochildrens.org/downsyndromecenter
Dr. Vellody and Dr. Nowalk discuss the latest on the COVID-19 Omicron variant and then answer listener questions on the COVID vaccine.
Please consider supporting the work of the Down Syndrome Center, including this podcast, by visiting https://www.givetochildrens.org/downsyndromecenter.
ID specialist and friend of the podcast, Dr. Andy Nowalk, joins the podcast to discuss the latest on COVID, including the Omicron variant.
Please consider supporting the work of the Down Syndrome Center of Western Pennsylvania at https://givetochildrens.org/downsyndromecenter.
Dr. Peter Bulova joins the podcast today to discuss myths and facts about Alzheimer disease in Down syndrome.
Adult Down Syndrome Center
Adult Down Syndrome Center of Western Pennsylvania | UPMC
Please consider partnering in the work of the Down Syndrome Center, including this podcast, by going to http://www.givetochildrens.org/downsyndromecenter. Thank you!
Tom Sannicandro joined the podcast today to share his expertise on college options available for people with Down syndrome.
Think College
Home | Think College
Special Needs Trusts Online
Special Needs Trust and Estate Plans to Guarantee Your Child's Future (specialneedstrustsonline.com)
Partner with Us!
http://www.givetochildrens.org/downsyndromecenter
Erica Balint, outreach coordinator for The Alliance for Infants and Toddlers, Inc., joined the podcast today to discuss Early Intervention Services for young children. What are early intervention services and how might they benefit children with Down syndrome? Listen to find out!
For more information on Early Intervention Services in Pennsylvania, go to:
Early Intervention (pa.gov)
The Alliance for Infants and Toddlers
HOME | The Alliance (afit.org)
To partner in the efforts of the Down Syndrome Center:
Down Syndrome Center is fundraising for Children's Hospital of Pittsburgh Foundation (justgiving.com)
Dr. Andy Nowalk joins the podcast again today to discuss the latest news in COVID as it relates to people with Down syndrome. The podcast highlights the release of the COVID vaccine for 5-11 year olds and discusses booster doses for people with Ds over 18 years old.
You can partner with us in our service to the community, including this podcast, by going to http://www.givetochildrens.org/downsyndromecenter
Dr. Stephanie Santoro with the Mass General Down Syndrome Program joined the podcast to discuss a relatively newly recognized condition called by several names including Unexplained Regression in Down Syndrome (URDS), Down Syndrome Disintegrative Disorder (DSDD), or Down Syndrome Regression Disorder (DSRD). Dr. Santoro will discuss the signs of the condition and the treatment options currently being found to be helpful in the latest research.
More Information
https://www.nature.com/articles/s41436-019-0706-8
Does My Loved One with Down Syndrome Have This Condition? Check Out This Regression Checklisthttps://static-content.springer.com/esm/art%3A10.1038%2Fs41436-019-0706-8/MediaObjects/41436_2019_706_MOESM2_ESM.docx
Find a Regional Down Syndrome Center Near You
Down Syndrome Clinic Listing | National Down Syndrome Congress (ndsccenter.org)
Selective (or "Picky") eaters are common in Pediatrics. Many parents receive advice on how to manage but what does the data show? Ann Meyers from Clinical Nutrition and Sarah Rossman from Occupational Therapy joined the podcast today to discuss this very important topic.
Resources
Tips for Feeding Picky Eaters - HealthyChildren.org
Child of Mine: Feeding with Love and Good Sense, Revised and Updated Edition: Satter, Ellyn: 8601419522477: Amazon.com: Books
Fearless Feeding: How to Raise Healthy Eaters From High Chair to High School: Jacobsen, Maryann, Castle, Jill: 9781732866201: Amazon.com: Books
Join Us!If you would like to partner in the work of the Down Syndrome Center, please visit http://www.givetochildrens.org/downsyndrome. Thank you!
Podcast photo credit: Getty Images
World-reknowned expert and author on mental health and wellness in people with Down syndrome, Dennis McGuire, joined the podcast today to talk about common (and usually normal) behaviors in older children and adults with Down syndrome. RESOURCES Mental Wellness in Adults with Down Syndrome (Book) Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges - Woodbine House
If People with Down Syndrome Ruled the World (Essay) National Association for Down Syndrome | If People with Down Syndrome Ruled the World (nads.org)
If you have benefitted from this podcast, please consider partnering in the work of the Down Syndrome Center at: http://www.givetochildrens.org/downsyndrome.
Dr. Tarin Santamaria, PsyD, NCSP, is the clinical psychologist for our Down Syndrome Center of Western Pennsylvania. She joined the podcast today to discuss how to assess and approach behaviors in school-aged children with Down syndrome.
Please consider partnering in the work of the Down Syndrome Center by visiting http://www.givetochildrens.org/downsyndrome
Dr. Nowalk joined to talk about the Delta variant outbreak and the potential impact for people with Down syndrome.
Pittsburgh Vaccine Trials Unit
https://covid19research.pitt.edu/pvtu
CDC COVID Data
https://www.cdc.gov/coronavirus/2019-ncov/index.html
Helen Milligan, physical therapist with the Trisomy 21 Program at Children's Hospital of Philadelphia, joined the podcast to answer a listener question regarding physical therapy in the school aged child.
Dr. Nowalk joined the podcast to discuss return to school for 2021 and ways that it looks different than even last year.
Dr. Katie Frank, PhD, OTR/L, joined the podcast today to talk about sensory processing difficulties in people with Ds and therapeutic approaches.
Resources:
http://adscresources.advocatehealth.com
Mental wellness in Ds book
Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges: Dennis McGuire, Brian Chicoine: 9781606132852: Amazon.com: Books
Out of Sync Child Series
The Out-of-Sync Child Series (3 books) Kindle Edition (amazon.com)
Sensational Kids Lucy Miller
Amazon.com : sensational child
STAR Institute
Sensory Processing - STAR Institute (sensoryhealth.org)
Dr. Meredith Wright Whittaker, PhD, joined the podcast today to share her personal experiences and literature review on pain perception and expression in people with Down syndrome.
For more information, please see the article discussed:
Pain perception in people with Down syndrome: a synthesis of clinical and experimental research (nih.gov)
Dr. Marilyn Bull, lead author of the Down Syndrome Healthcare Guidelines, joined the podcast today to discuss the guideline process, hint at the upcoming revised healthcare guideline, and specifically comment on atlanto-axial instability (AAI).
For parents/caregivers:
Children with Down Syndrome: Health Care Information for Families - HealthyChildren.org
For healthcare professionals:
Health Supervision for Children With Down Syndrome | American Academy of Pediatrics (aappublications.org)
Dr. Ruth Brown, psychologist from Virginia Commonwealth University, joined the podcast to discuss preliminary data from her study on the psychological impact of the COVID pandemic in people with Ds. If you would like to add to this data set, please consider taking the survey at http://tiny.cc/DSFAM_VCU.
Dr. Vellody was joined by Lauren Costabile, founder of Hearts of Joy International. Listen and learn about the work that this amazing organization is doing to bring hope to children with Down syndrome with congenital heart defects.
Dr. Vellody was joined today by Jawanda and Rachel Mast who came to speak about the importance of national level policy and advocacy. They also discussed the National Down Syndrome Congress' Ally for Advocacy campaign, and how we can get involved.
https://www.ndsccenter.org/support-get-involved/campaign/
In our ongoing goal to keep you up-to-date with the latest changes in the COVID-19 pandemic, Dr. Nowalk joined the podcast again today to discuss COVID vaccination in children with Down syndrome down to 12 years old. Dr. Nowalk also addressed the latest CDC guidelines on vaccinated individuals being mask-free in public settings.
Listen as Dr. Vellody answers yet another listener question, this time discussing orthodontic care with Dr. Lindsay Schuster.
Dr. Lindsay Schuster, DMD, MS - Pittsburgh, PA - Orthodontics and Dentofacial Orthopedics - Book Appointment (upmc.com)
Dr. Vellody is joined by Sarah Hill who is the Convention Director for the National Down Syndrome Congress. The 2021 NDSC Convention is a one-of-a-kind opportunity for families and self-advocates to get information on Down syndrome. This year's NDSC Convention will be virtual and offer loads of opportunities for attendees that are discussed on this podcast. To learn more or to register for the NDSC Convention, go to https://www.ndsccenter.org/annual-convention/.
Join us as we remember the history of this podcast and hear beautiful music and testimonials shared by our listeners. And take a listen to this song by Troy Griffith.
Troy Griffith "Ten by Twelve" Music Video
https://youtu.be/vNA4X9d7yT8
Dr. Vellody was joined by NDSC Senior Education Policy Advisor Ricki Sabia to discuss topics surrounding Education in people with Down syndrome. Ricki shared her extensive expertise in this area as well as her personal experiences as a mother navigating the educational landscape.
Ricki Sabia | National Down Syndrome Congress (ndsccenter.org)
TIES Center
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In honor of World Down Syndrome Day, we had some VERY special guests including my brother and parents! Listen in as they discuss their experiences 46 years ago this month and how they compare to today.
Dr. Andrew Nowalk, pediatric infectious diseases specialist at the Children's Hospital of Pittsburgh, joins Dr. Vellody to talk about current topics of variants, vaccines, and a new study in Down syndrome from the T21-RS group.
Medical vulnerability of individuals with Down syndrome to severe COVID-19–data from the Trisomy 21 Research Society and the UK ISARIC4C survey (t21rs.org)
Dr. Jillian Rork joins the podcast again today as a board certified pediatric dermatologist to discuss skin conditions in Down syndrome. This is Part 2 of a video podcast series on this topic. Topics in today's episode include:
- Seborrheic dermatitis
- Folliculitis
- Hidradenitis suppurativa
- Acanthosis nigricans
- Psoriasis
- Vitiligo
- Syringomas
- Toenail fungus (onychomycosis)
- Premature aging
- Skin cancers
Dr. Vellody was joined by specialists from the Children's Hospital of Pittsburgh Feeding Team to discuss techniques to effectively feed infants with Down syndrome. Many thanks to our guests on the podcast:
- Uzma Faisal (Lactation)
- Jamie Scheller (Occupational Therapy)
- Sheri Rosen (Speech Therapy)
Dr. Jillian Rork joins the podcast today as a board certified pediatric dermatologist to discuss skin conditions in Down syndrome. This is Part 1 of a video podcast series on this topic. Topics in today's episode include:
- Dry skin
- Keratosis pilaris
- Eczema
- Cutis marmorata
- Dry lips, angular chelitis
- Fissured tongue
- Perioral dermatitis
- Diaper rash
- Alopecia areata
Dr. Nicole Baumer joined the podcast again today, this time to discuss a type of seizure called infantile spams that are seen more commonly in people with Down syndrome.
For more information and helpful videos, see:
Epilepsy Foundation
https://www.epilepsy.com/learn/types-epilepsy-syndromes/infantile-spasms-west-syndrome
Dr. Baumer's Summary https://www.childrenshospital.org/-/media/Centers-and-Services/Programs/A_E/Down-Syndrome-Program/down-syndrome-infantile-spasms.ashx?la=en&hash=23FA19753FA6A6DA74113DEE2F8B11D9938BDCCD
Dr. Andrew Nowalk from Pediatric Infectious Diseases joined the podcast today for an update on COVID-19 infections in Down syndrome. We discussed the COVID-19 vaccine in general and also specifically in people with Down syndrome.
Down Syndrome Medical Interest Group (DSMIG) Statement on COVID-19 Vaccination
https://www.dsmig-usa.org/resources/Documents/DSMIG%20COVID%20vaccine%20position%20statement_121720.pdf
American College of Obstetrics and Gynecology Statement on COVID-19 Vaccination
https://www.acog.org/clinical/clinical-guidance/practice-advisory/articles/2020/12/vaccinating-pregnant-and-lactating-patients-against-covid-19
Dr. Kristen Ehrenberger, MD, PhD joins us on the podcast today to discuss the medical history of Down syndrome. Dr. Ehrenberger is dually boarded in Internal Medicine and Pediatrics, and she also has a degree in Medical History.
Listen in as Rob Wrubel shares personal and professional advice on financial planning on today's podcast. You can find more information and resources from Rob at his website at http://robwrubel.com.
The Down Syndrome Association of Pittsburgh hosted a virtual town hall to discuss questions related to COVID and Down Syndrome. Dr. Vellody, Dr. Nowalk, and Dr. Freeman were all present to answer questions live.
Dr. Peter Bulova, Director of the Adult Clinic at the Down Syndrome Center of Western Pennsylvania, joins us on the podcast to talk about the recently released Adult Down Syndrome Healthcare Guidelines.
https://jamanetwork.com/journals/jama/fullarticle/2771907
Dr. Brian Skotko joined us again as a guest one the podcast to discuss Down Syndrome Clinic to You (DSC2U), a new and innovative way to get personalized healthcare recommendations for your loved one with Down syndrome.
Down Syndrome Clinic to You (DSC2U)
https://www.dsc2u.org/
Today, we were joined by Dana Halle, Co-Founder/Executive Director of the Down Syndrome Foundation of Orange County and
Developer and Lead Instructor of The Learning Program and LP Online. We discussed tips and resources for ultimate reading success in people with Down syndrome.
LP Online
https://www.dsfoc.org/online-courses/
Teaching Reading to Children with Down Syndrome
https://www.amazon.com/Teaching-Reading-Children-Down-Syndrome/dp/0933149557/ref=sr_1_3?crid=QYQX8J7DYY6X&dchild=1&keywords=teaching+children+with+down+syndrome+to+read&qid=1604069022&sprefix=teaching+children+with+down+syn%2Caps%2C155&sr=8-3
Down Syndrome Education International RLI
https://www.down-syndrome.org/en-us/resources/teaching/rli/
Dr. Nowalk joined the podcast to give us an update on Down syndrome and COVID. We discuss 2 recently published articles that have gotten a lot of press recently.
https://www.nature.com/articles/s41436-020-01004-w
https://www.acpjournals.org/doi/10.7326/M20-4986
Dr. Lina Patel, psychologist from the Sie Center at Children's Colorado, joined Dr. Vellody on the podcast to talk about toilet training. Dr. Patel is the co-author of the recent book Potty Time for Kids with Down Syndrome: Lose the Diapers, Not Your Patience.
https://www.woodbinehouse.com/product/potty-time-for-kids-with-down-syndrome-lose-the-diapers-not-your-patience/
In a continuation of our discussions on Race and Down Syndrome, author Meeka Caldwell joined the podcast today to talk about her experiences as a mother and her children's book "A Friend Like Anian."
Amazon Link
https://www.amazon.com/Friend-Like-Anian-Meeka-Caldwell/dp/1734334681/ref
If you would like an autographed copy of the book from Anian, e-mail your request to brwnbby321@gmail.com
Friend of the podcast, Dr. Andrew Nowalk, MD, PhD, joined us again for an update on optimizing safety in school re-opening.
Erin Kelly (Down Syndrome Center of Western PA Program Coordinator) and Meredith Peterson (Executive Director, Down Syndrome Association of Pittsburgh) joined Dr. Vellody on today's podcast to discuss exciting changes at both organizations.
Down Syndrome Association
https://www.dsapgh.org/
Buddy Walk Pittsburgh 2020
https://buddywalk.dsapgh.org/
Down Syndrome Center of Western PA
www.chp.edu/downsyndrome
Dr. Baumer re-joined the podcast to share her pediatric neurodevelopmental expertise in the dual diagnosis of autism and Down syndrome.
Dr. Vellody was joined on the podcast by Dr. Nicole Baumer who is a pediatric neurodevelopment specialist with expertise in ADHD in Down syndrome.
Continuing in our topic of race and healthcare, Dr. Vellody was joined by Kimberly Ewing and Roxanne Hoke-Chandler.
NDSC Town Hall Meetings on Race Relations
https://www.ndsccenter.org/programs-resources/race-relations/
Facebook Group: African American/Black people who have Children with Down syndrome
https://www.facebook.com/groups/ParentsOfAfricanAmWithDs
Dr. Nowalk joined the podcast again to discuss preliminary thoughts on school reopening this fall.
Michelle Zoromski, Executive Director, Grants & Operations of Reece's Rainbow, joined Dr. Vellody on this podcast to discuss international adoption in Down syndrome.
Reece's Rainbow
https://reecesrainbow.org/
There have been several papers about COVID-19 and Down syndrome released recently that have gotten some media attention. Friend of the podcast, Dr. Andrew Nowalk, and our regional coronavirus expert, Dr. Megan Freeman, join the podcast today to discuss their interpretations of these studies.
Shauntel Neal-Howe (Vice President, National Down Syndrome Congress) and Valerie Williams (Secretary, National Down Syndrome Congress) joined Dr. Vellody on the podcast to discuss their experiences with race and healthcare, including their experiences as parents of children with Down syndrome.
Dr. Nowalk rejoined the podcast today to talk about timely topics such as safely bringing children to medical visits and daycare settings. We also brought a special focus on potential summer vacations and visits with extended family. Dr. Nowalk also provided his perspective on Pediatric Multi-system Inflammatory Syndrome that has been highly discussed recently given its apparent association with COVID in children.
Dr. Vellody was joined on the podcast today by Heather Sachs, JD, the Policy and Advocacy Director of the National Down Syndrome Congress. They discussed the rights of people with Down syndrome when it comes to obtaining equal medical treatment, particularly during the COVID-19 pandemic.
NDSC Policy and Advocacy
https://www.ndsccenter.org/political-advocacy/
National Down Syndrome Advocacy Coalition
https://www.ndsccenter.org/political-advocacy/national-down-syndrome-advocacy-coalition/
National Down Syndrome Advocacy Coalition Webinar on COVID
https://register.gotowebinar.com/recording/27821348694419971
NDSC COVID-19 Resources
https://www.ndsccenter.org/programs-resources/covid-19-resources/
Dr. Nowalk rejoined us on the podcast to go through several myths (and a couple truths) about coronavirus/COVID-19.
Dr. Sean Smith is a Professor of Special Education at the University of Kansas and is a nationally recognized expert in special education, particularly in the use of technology in educational programming. Given the coronavirus pandemic, many children with Ds are now needing to use online tools that may not be ideal for their learning on their own. Dr. Smith discusses these issues as well as multiple other resources on this podcast.
NDSC Webinar Series on Education with Dr. Smith (https://www.ndsccenter.org/outreach-education/parent-webinars/)
IXL - https://www.ixl.com/
Study Island = https://www.studyisland.com/
K12 incorporated - https://www.k12.com/
Connections Academy - https://www.connectionsacademy.com/
Pearson Online Learning - https://www.pearson.com/us/prek-12/products-services-teaching/online-blended-learning-solutions/pearson-connexus/online-learning-courses.html
Khan Academy - https://www.khanacademy.org/
Starfall.com - https://www.starfall.com/h/
Since our last episode on respiratory viruses was recorded prior to the arrival of coronavirus (causing COVID 19) in the U.S., Dr. Nowalk graciously agreed to join us to give us the current status of this viral outbreak and what we know about it's potential impact in children with Down syndrome.
Dr. Andrew Nowalk joins us on the podcast today to discuss general prevention of respiratory illness in children with Down syndrome.
This podcast was recorded prior to the COVID-19 spread so the focus is on influenza, RSV, and other viruses. The same general principles will apply in terms of prevention from viruses in general.
Dr. Brian Martin joined us on the podcast to discuss common pediatric dental issues seen in children with Down syndrome.
Betsy Gilbert of Therapy Works LLC joined Dr. Vellody on the podcast to discuss speech issues in Down syndrome, particularly speech apraxia.
To get more information on speech apraxia and Down syndrome from Libby Kumin and the National Down Syndrome Congress: https://www.ndsccenter.org/wp-content/uploads/Apraxia.pdf
To get more information on speech apraxia: https://www.apraxia-kids.org/new-to-apraxia/ To get more information about Therapy Works or to schedule an appointment: https://therapyworksllc.com
Dr. Vellody was joined by the foremost experts in the world regarding sibling topics related to Down syndrome. Ms. Levine and Dr. Skotko have numerous publications and have lead many national workshops on this topic.
More information on sibling workshops can be found at:
https://siblingslearnaboutdownsyndrome.com/
The study referenced in the podcast can be found at:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3348944/
Fasten Your Seatbelt Book
https://www.woodbinehouse.com/product/fasten-seatbelt-crash-course-syndrome-brothers-sisters/
Fasten Your Seatbelt YouTube Channel
https://www.youtube.com/channel/UCwGc9-pY5ACu1t53aIQEKHg
NDSC Adult Sibling Toolkit
https://www.ndsccenter.org/programs-resources/adult-siblings/
Sibling Leadership Network
https://siblingleadership.org/
Sibling Support Project
https://www.siblingsupport.org/
Adult Medical Issues Podcast
https://www.chp.edu/our-services/down-syndrome/podcasts/adult-related-issued
More information on Dr. Skotko and his work:
http://brianskotko.com
Melissa Parisi and Lisa Kaeser fro the National Institutes of Health joined Dr. Vellody on the podcast today to discuss current research at the NIH. Specifically, they discussed the DS-Connect registry and the INCLUDE research project. Information on both of these studies can be found at:
DS-Connect® Registry: http://DSConnect.nih.gov/
The INCLUDE Research Project: https://www.nih.gov/include-project
Dr. Vellody is joined on the podcast by Duke faculty members Dr. Priya Kishnani and Dr. Sarah Hart. Together they discuss the common hematologic (blood) issues seen in Down syndrome and highlight the findings of a very recently published study on anemia in Down syndrome.
https://www.ncbi.nlm.nih.gov/pubmed/31417190
Dr. Vellody is joined on the show by Rob Snow, a stand-up comic whose life was changed by his son. He now has a traveling improv group called The Improvaneers - and all the comedians have Down syndrome. Find out more information at www.standupfordowns.org.
Bryan Gratton joined Dr. Vellody today on the podcast to discuss two of his favorite interests - wholistic financial advising, particularly around people with special needs and the Night to Remember event.
Bryan can be reached at:
bgratton@financialguide.com
724-513-9654
https://www.grattonkerrfinancialgroup.com/
The National Down Syndrome toolkits can be found at:
https://www.ndsccenter.org/programs-resources/family-care-toolkit/
https://www.ndsccenter.org/programs-resources/adult-siblings/
Information on Day/Night to Remember can be found at:
https://discovertogether.com/a-day-to-remember
https://discovertogether.com/anighttoremember
Dr. Vellody was joined by Gina Cusano, past president of the Down Syndrome Association of Pittsburgh, to discuss DSAP's history and current endeavors.
Dr. Vellody was a guest on the That's Pediatrics Podcast through UPMC Children's Hospital. Dr. Vellody discusses the impact of his brother on his career choice as well as the role of the Down Syndrome Center of Western Pennsylvania. Dr. Vellody also highlights the upcoming NDSC Convention.
Dr. Vellody is joined today by the Executive Director of the National Down Syndrome Congress, David Tolleson, and the Convention Coordinator and Strategic Initiatives Director, Coleen Popp. They are discussing the National Down Syndrome Congress (http://www.ndsccenter.org) and the upcoming convention in Pittsburgh from June 27-30, 2019 (https://www.ndsccenter.org/annual-convention/).
This episode is a video podcast with my good friend and self-advocate Daniel Chaplin showing how he got the perfect fit with his CPAP mask. We also get to see Daniel's dance moves at the end! :)
The nationally recognized physical therapy specialist, Pat Winders, joins us for another podcast on gross motor development, this time focused on older children.
Pat Winders, world-recognized expert in gross motor skills in children with Down syndrome, joins us on the podcast.
This is a video podcast between Dr. Vellody and DeLaTorre Orthotics and Prosthetics in Pittsburgh (www.delatorreop.com) regarding orthotics for children with Down syndrome.
We were re-joined on the podcast with Joan Medlen, MEd, RD, LD to discuss nutrition advice in Down syndrome, including celiac disease related information. She is the author of the Down Syndrome Nutrition Handbook (https://www.amazon.com/Down-Syndrome-Nutrition-Handbook-Lifestyles/dp/0978611802/ref=sr_1_1?ie=UTF8&qid=1524864643&sr=8-1&keywords=down+syndrome+nutrition).
We are joined on the podcast with Joan Medlen, MEd, RD, LD to discuss general nutrition advice in Down syndrome. She is the author of the Down Syndrome Nutrition Handbook (https://www.amazon.com/Down-Syndrome-Nutrition-Handbook-Lifestyles/dp/0978611802/ref=sr_1_1?ie=UTF8&qid=1524864643&sr=8-1&keywords=down+syndrome+nutrition).
Dr. Libby Kumin rejoins the podcast to continue the discussion on speech, language, and communication in Down syndrome - this time with a focus on later childhood speech development.
Dr. Libby Kumin joined the podcast today to discuss early communication skills in children with Down syndrome.
Here's just a quick 1 minute WDSD video that the Children's Hospital created to celebrate the day! Enjoy and Happy World Down Syndrome Day!
Drs. Tobey and Simons joined our podcast again to discuss the INSPIRE study that uses a hypoglossal nerve stimulator for sleep apnea.
Today's podcast features Dr. Simons and Dr. Tobey, Ear, Nose, and Throat physicians at the Children's Hospital of Pittsburgh. They joined us to give an update on sleep apnea in Down syndrome.
Dr. Nischal joined us again on the podcast, this time to talk about the corneal cross-linking procedure being done for keratoconus.
Dr. Ken Nischal joins us on the podcast today to discuss general eye/vision care issues in Down syndrome.
This podcast is a telephone interview between Dr. Vellody and Dr. David Stein. Dr. Stein is a psychologist who published the very popular book called Supportive Positive Behaviors in Children and Teens with Down Syndrome - The Respond but Don't React Method. In this podcast, Dr. Vellody continues the discussion of common behavioral scenarios that often present in children with Down syndrome.
This podcast is a telephone interview between Dr. Vellody and Dr. David Stein. Dr. Stein is a psychologist who published the very popular book called Supportive Positive Behaviors in Children and Teens with Down Syndrome - The Respond but Don't React Method. In this podcast, Dr. Vellody presents some common behavioral scenarios that often present in children with Down syndrome.
Dr. Vellody was invited to be a guest on the Up at Down Country radio show (http://www.upatdowncountry.com). This is Part 2 of the radio interview where Dr. Vellody finishes discussing how best to deliver the diagnosis and also discusses medical issues that masquerade as educational or behavioral issues.
Dr. Vellody was invited to be a guest on the Up at Down Country radio show (http://www.upatdowncountry.com). This is Part 1 of the radio interview where Dr. Vellody discusses his family, prenatal testing, and how providers should deliver the diagnosis of Down syndrome.
Drs. Vellody, Bulova, and McCormick along with Sheila Cannon answer questions on teen and adult topics at the NDSC Convention 2016.
Dr. Vellody and Sheila Cannon participated in an informal question and answer session with family members at the National Down Syndrome Congress convention in 2016.
Dr. Vellody spoke at the 2016 National Down Syndrome Congress convention on Medical Issues in Down Syndrome. This is Part 2 of the lecture, including the slides used during the presentation.
Dr. Vellody spoke at the 2016 National Down Syndrome Congress convention on Medical Issues in Down Syndrome. This is Part 1 of the lecture, including the slides used during the presentation.
Teaching children with Down syndrome an alternate way to communicate is an excellent way to avoid frustrations while waiting for their verbal speech. This video from Patty Shukla Kids TV helps teach younger children some simple signs that they can use.
Happy World Down Syndrome Day! Please enjoy this video created by the Children's Hospital of Pittsburgh.
World reknowned expert on sexuality and puberty issues in people with Down syndrome, Terri Couwenhoven, joins us again for the second part of our discussion.
This podcast focuses on puberty and sexuality issues in Down syndrome. We are joined by Terri Couwenhoven who is the worldwide expert in this topic.
Dr. Vellody spoke to parents and families at the 2014 National Down Syndrome Congress convention in Indianapolis. This recording includes a video component with the slides from the lecture.
Dr. Vellody discusses behavioral issues commonly associated with Down syndrome and the use of time-out as a discipline technique.
Dr. Bulova joins us today from the Adult Down Syndrome Center to discuss issues that can arise in adults with Down syndrome.
Dr. Vellody continues the topic of Toilet Training in Down syndrome. Today's podcast focuses on problems that can arise during toilet training and ways to address those problems.
In this podcast, Dr. Vellody discusses assessing for toilet training readiness and general concepts of toilet training
Today is World Down Syndrome Day. Please enjoy this video courtesy of the National Down Syndrome Congress. This video contains the resolution that the adults with Down syndrome wrote at the last national meeting.