Advertise on podcast: Down Syndrome Center Podcast

As parents and caregivers for people with Down syndrome, it can be difficult to know how to interpret research studies.  How can we determine if an individual study is something that our loved one should participate in?  We are joined on the podcast with Dr. Nicole White and Dr. Laura Cifra-Bean to help us interpret and understand the risks and benefits of research studies. For more information on current research studies, go to www.clinicaltrials.gov.   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to [email protected]. 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.

Health is more than just medical diagnoses and lab tests.  Dr. Stephanie Santoro joined the podcast today to discuss a new health survey that her team created to assess the health of people with Down syndrome.  To participate in this online survey, go to https://redcap.link/DSHM.   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to [email protected]. 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.

Physical therapists Ginny Paleg, Roslyn Livingstone, and Helen Milligan joined the podcast to talk about their approach to physical therapy in younger children with Down syndrome.  They drew upon the published review article that can be found here https://pubmed.ncbi.nlm.nih.gov/29630564/.  They discussed the "6 F-Words" of therapy: fitness, functioning, family, fun, friendships, future.   If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to [email protected]. 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.

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 [email protected]. 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 [email protected]. 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 [email protected]. 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 [email protected], 215-326-9153.     If you would like to suggest a topic for us to cover on the podcast, please send an e-mail to [email protected]. 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 [email protected]. 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 Suggested NDSS 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 [email protected]. 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 [email protected]. 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 [email protected]. 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 [email protected]. 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 [email protected]. 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 [email protected]. 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 [email protected]. 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.