Smiles Included: Navigating through life with our rare disease superheroes Podcast Artwork Image

Smiles Included: Navigating through life with our rare disease superheroes

Emily Beauclair

As a mom of a son with Skraban-Deardorff Syndrome, a WDR26-related intellectual disability, I started listening to podcasts as a form of therapy and to get advice for how to navigate through the emotions and questions that come with having a child with a rare disease diagnosis. I started this podcast for those impacted by Skraban-Deardorff, and other rare diseases, as a way to share stories, ask and answer questions, get advice and have a platform where we can work to understand together what the diagnosis means and how we can support each other. The podcast will feature guests and experts across the rare disease spectrum that highlight how to bring out the best in our rare kids and showcase that we are not alone, but part of a great community of people supporting our rare children. If you have any topics you would like to be discussed on the show, or if you would like to be a guest, please reach out to me at SmilesIncludedPodcast@gmail.com.
Dr. Thomas Frazier and Katie Huba: Groundbreaking research to understand the cognitive and behavioral patterns of WDR26 patientsMarch 29, 2024
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Laura Johansen: Triumphs, Challenges, and Hope in Raising a Rare ChildNovember 29, 2023
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Jackie and Eddy Jones: A rare disease journey of hope, resilience and vulnerability.....and a golf tournament!August 17, 2023
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Allison Pyer: Unraveling the Complexities of the Neurotypical-Neurodiverse ConnectionMay 16, 2023
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Kristen Worrell: Navigating the uncertainty of the SKDEAS spectrumMarch 29, 2023
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Rare Disease Day 2023February 28, 2023
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Andrew Houser: A SKDEAS superhero talks to us about what the diagnosis has meant to him and impacted his lifeDecember 12, 2022
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Yelena House: Reminding us that raising a SKDEAS kid is a marathon, not a sprint, and our kids will constantly surprise usSeptember 29, 2022
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Sherri Blaik: Helpful tips for success at potty training our rare childrenSeptember 07, 2022
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Sherri Blaik: Demystifying the ABA experience and other therapies that have benefitted her SKDEAS daughterSeptember 07, 2022
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Sebrina Harrell: A glimpse into the life of a SKDEAS teenager, including managing seizures and impacts on the parentsAugust 28, 2022
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Bailey Wallace: The sibling experience and being at peace with the diagnosis.August 14, 2022
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Lisa Patterson: Raising a SKDEAS teenager and the importance of self-careJuly 24, 2022
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Emily Gerst: A conversation about the impact of the Skraban-Deardorff diagnosis and advocating for our childrenJuly 06, 2022
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Cynthia Lang: Skraban-Deardorff mom working to find a treatment for her sonJune 16, 2022
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