Smiles Included: Navigating through life with our rare disease superheroes
by Emily Beauclair
March 30, 2024 1:00 am
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.
Recent Episodes
Dr. Thomas Frazier and Katie Huba: Groundbreaking research to understand the cognitive and behavioral patterns of WDR26 patients
3 weeks agoLaura Johansen: Triumphs, Challenges, and Hope in Raising a Rare Child
5 months agoJackie and Eddy Jones: A rare disease journey of hope, resilience and vulnerability.....and a golf tournament!
8 months agoAllison Pyer: Unraveling the Complexities of the Neurotypical-Neurodiverse Connection
11 months agoKristen Worrell: Navigating the uncertainty of the SKDEAS spectrum
1 year agoRare Disease Day 2023
1 year agoAndrew Houser: A SKDEAS superhero talks to us about what the diagnosis has meant to him and impacted his life
1 year agoYelena House: Reminding us that raising a SKDEAS kid is a marathon, not a sprint, and our kids will constantly surprise us
2 years agoSherri Blaik: Helpful tips for success at potty training our rare children
2 years agoSherri Blaik: Demystifying the ABA experience and other therapies that have benefitted her SKDEAS daughter
2 years ago