Down Syndrome Center 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-dow...

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...

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 lik...

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 Suggested NDSS CARE-DS ( https://careds.org ) Adult Down Syndrome Center ( https://adscresources.advocatehealth.com/) Adult Healthcare Guidelines ( https://www.globaldownsyndrome.org/medical-c...

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 Syn...

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 t...

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   DownSyndrome...

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 Syn...

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...

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 educa...

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 ton...

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 p...

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/definitio...

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 li...

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/dow...

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 dis...

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   DownSynd...

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 sug...

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 unw...

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 ND...

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...

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 DownSyndromeCente...

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...

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...