Down Syndrome Center 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.

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 [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. 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 [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. 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 [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.

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.