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 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 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.