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Smiles Included: Navigating through life with our rare disease superheroesAuthor: 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. Language: en-us Genres: Kids & Family, Parenting, Personal Journals, Society & Culture Contact email: Get it Feed URL: Get it iTunes ID: Get it |
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Cynthia Lang: Inspiring Progress in SKDEAS Research & Treatments
Episode 1
Tuesday, 10 September, 2024
Get ready for an inspiring episode of the Smiles Included Podcast as we welcome back Cynthia Lang. She returns with a heartfelt update on her ongoing quest to find a treatment for her son, Sebastian, and shares exciting news about the Skraban-Deardorff Syndrome Foundation's role in advancing this critical research.Discover how Transcripta Bio, formerly known as Rarebase, is making significant strides in rare disease research through innovative drug repurposing techniques. Cynthia’s journey began over two years ago, and the groundbreaking work of Transcripta Bio is bringing her closer to realizing her dream of a treatment for Sebastian.Tune in to hear about potential breakthrough drugs and groundbreaking collaborations with leading doctors and institutions that could transform the future for the rare disease community. Cynthia will also offer guidance on how you can get involved and support this vital ongoing research.TranscriptaBio.comPlease visit SKDEAS.org for more information about Skraban-Deardorff and how you can support our superheroes.
