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Recent episodes
#224 - Leucovorin - What is it and is there a role in Down syndrome?
Apr 23, 2026
Unknown duration
#223 - Updated Vaccination Guidelines - What Do They Mean for People with Ds?
Apr 9, 2026
Unknown duration
#222 - Exercise in Down syndrome (With Dr. Thessa Hilgenkamp)
Mar 19, 2026
Unknown duration
#221 - Central Auditory Processing Disorder (CAPD) and Cortical Visual Impairment (CVI) in Ds
Mar 5, 2026
Unknown duration
#220 - CARE Down Syndrome (CARE DS)
Feb 19, 2026
Unknown duration
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| Date | Episode | Description | Length | ||||||
|---|---|---|---|---|---|---|---|---|---|
| 4/23/26 |  #224 - Leucovorin - What is it and is there a role in Down syndrome? | 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. | — | ||||||
| 4/9/26 |  #223 - Updated Vaccination Guidelines - What Do They Mean for People with Ds? | 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. | — | ||||||
| 3/19/26 |  #222 - Exercise in Down syndrome (With Dr. Thessa Hilgenkamp) | 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. | — | ||||||
| 3/5/26 |  #221 - Central Auditory Processing Disorder (CAPD) and Cortical Visual Impairment (CVI) in Ds | 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. | — | ||||||
| 2/19/26 |  #220 - CARE Down Syndrome (CARE DS) | 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 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. | — | ||||||
| 2/5/26 |  #219 - Drooling, Tongue Protrusion, and other Oral Motor Topics | 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 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. | — | ||||||
| 1/22/26 |  #218 - Vision Concerns (with Dr. Michael Puente) | 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 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. | — | ||||||
| 1/8/26 |  #217 - Neuropsychological and IQ testing (with Dr. Rosemarie Manfredi) | 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 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. | — | ||||||
| 12/18/25 |  #216 - Speech Clarity | 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. | — | ||||||
| 12/4/25 |  #215 - Hip Issues in Down syndrome (with Dr. Ricki Koehler) | 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 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. | — | ||||||
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| 11/20/25 |  #214 - REACH - Serving Children with Hirschsprung Disease | 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 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. | — | ||||||
| 11/6/25 |  #213 - Cholesterol in Down syndrome - Should we worry about it? | 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 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. | — | ||||||
| 10/23/25 |  #212 - What To Know If Your Child Is Admitted To A Hospital | 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 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. | — | ||||||
| 10/9/25 |  #211 - Hey "Device," Do You Understand Me? | 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 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. | — | ||||||
| 9/25/25 |  #210 - Parent Education & Advocacy Leadership (PEAL) Center | 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 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. | — | ||||||
| 9/11/25 |  #209 - Advocacy Alert! (Part 2) - Medicaid Changes | 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 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. | — | ||||||
| 9/4/25 |  #208 - Advocacy Alert! (Part 1) - IDEA, Federal Changes, Dept of Education | 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 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. | — | ||||||
| 8/21/25 |  #207 - Red Down Mexico (English) | 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 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. | — | ||||||
| 7/24/25 |  #206 - Mental Health in Mosaic Down Syndrome | 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 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. | — | ||||||
| 7/10/25 |  #205 - Update on Sleep Apnea | Dr. Rachel Whelan and Dr. Ryan Soose joined the podcast today to discuss sleep apnea in both children and adults with Down syndrome. The podcast discusses how and when to screen for sleep apnea and management options that currently are in use. For more information on the pediatric hypoglossal nerve stimulator trial discussed on the podcast, go to: https://clinicaltrials.gov/study/NCT04801771?cond=Down%20syndrome,%20sleep%20apnea&rank=10 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. | — | ||||||
| 6/19/25 |  #204 - Down Syndrome Medical Interest Group (DSMIG) and Project Echo | Dr. Brian Chicoine joined the podcast to talk about the Down Syndrome Medical Interest Group (DSMIG) and Project Echo. For more information on DSMIG: For more information on Project Echo: 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. | — | ||||||
| 6/5/25 |  #203 - Child Life Specialists | Child life specialists are specially trained to prepare children and family members for medical experiences and teach techniques to help reduce stress and anxiety. Stephanie Colaberardino, MS, CCLS, CIMI joined the podcast today to talk about how a Child Life Team can be helpful for patients with Down syndrome. Children's Hospital of Pittsburgh Child Life https://www.chp.edu/our-services/child-life/specialist-assistant Children's Hospital of Pittsburgh Adaptive Care Team https://www.chp.edu/for-parents/support-services/family-support-services 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. | — | ||||||
| 5/22/25 |  #202 - Reflections From An Adult Sibling | Author Debbie Miller joined the podcast today to discuss her life experiences with her sibling Rick. Debbie has written a memoir called Raising Ricky which can be found at: https://a.co/d/4ILqLyD (book and audiobook) 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. | — | ||||||
| 5/8/25 |  #201 - Shoes and Orthotics (with Dr. Sarah Mann) | Dr. Sarah Mann joined the podcast today to discuss foot issues in Down syndrome and the role for supportive shoes and orthotics. For more information on the Mann Method Therapy Network: https://www.mannmethodpt.com 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. | — | ||||||
| 4/29/25 |  #200 - The Next Generation! | In honor of the 200th episode of the podcast, three very special guests joined the podcast today to share their memories and the impact that their Uncle Das has had on their lives. | — | ||||||
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Chart Positions
2 placements across 2 markets.
Chart Positions
2 placements across 2 markets.