Guest Speakers:   

• Dr. Ayah Ibrahim, Disability Advocate, mother of a daughter with Down Syndrome 
• Tatiana Salinas, Bilingual (Spanish) Family Support Specialist for the Massachusetts Down Syndrome Congress, mother of a daughter with Down syndrome 
• Katie Stoll, MS, Licensed Genetic Counselor and Executive Director of the Genetic Support Foundation 

Guest Host: 

• Dr. Stephanie Meredith, Program Director of Lettercase and Development Director at the Genetic Support Foundation, mother of a son with Down syndrome 

October is Down Syndrome Awareness Month. Listen to our latest episode of MCH Bridges where guest host and Lettercase Program Director Dr. Stephanie Meredith reviews some of the findings from her recent study focused on the experiences of parents receiving a prenatal diagnosis of Down syndrome. Dr. Meredith approaches her research as the mother of a 24-year-old son with Down syndrome. Additionally, listeners will gain insight from a recent project aimed at improving support for Black and Hispanic new and expectant parents of children with Down syndrome. 

Throughout the episode, Dr. Meredith uplifts the lived experiences of guest speakers Ayah Ibrahim and Tatiana Salinas, two mothers of children with Down syndrome, and emphasizes the importance and real-world impact of their diagnosis experiences. You will also hear from Katie Stoll, providing the perspective of a health care professional and leader of the Genetic Support Foundation on how to best support clinicians and families who receive care.  

Tune in to witness an important conversation between our guest host and speakers as they delve into what advocates and healthcare professionals can do to reduce emotional harm and disability bias and, instead, empower parents with information and support during this critical time. 

Disclaimer: The views presented in this podcast are solely the responsibility of the author(s) and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors, or Methodology Committee. 

Resources:  

• Lettercase 
• Lettercase PCORI Resources 
• Genetic Support Foundation 
• The impact of implicit and explicit bias about disabilities on parent experiences and information provided during prenatal screening and testing by Meredith et al. 
• Healthcare experiences of patients with Down syndrome who are Black, African American, of African descent, or of mixed race by Krell et al. 
• Healthcare experiences of patients with Down syndrome from primarily Spanish-speaking households by Chung et al. 
• Parent-reported genetic counselor adherence to the NSGC practice resource for communicating a potential prenatal diagnosis: Impact on the Down syndrome diagnosis experience by Ijaz et al. 
• Massachusetts Down Syndrome Congress 
• National Parents First Call Center 
• Down Syndrome Diagnosis Network 
• American Academy of Pediatrics (AAP) Down Syndrome Guidelines 
• Practice guidelines for communicating a prenatal or postnatal diagnosis of Down syndrome: recommendations of the national society of genetic counselors by Sheets et al. 
• National Down Syndrome Congress Clinic List 
• Jack’s Basket 

We are where you are! Listen to this and other episodes on www.mchbridges.org, Apple Podcasts, Spotify, or Overcast. 

Consider completing this short survey to share input and let us know who or what you’d like to hear about in future episodes. If you have any questions or suggestions about the podcast, please contact Nia Sutton (nsutton@amchp.org) and Eden Desta (edesta@amchp.org).