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 [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. 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 [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. 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 [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.

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 [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.

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 [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'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 [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'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 [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.

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 [email protected].

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. 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 [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. 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 [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.