Smiles Included: Navigating through life with our rare disease superheroes
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.
Episodes
16 episodes
Cynthia Lang: Inspiring Progress in SKDEAS Research & Treatments
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-D...
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Season 3
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Episode 1
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28:35
Dr. Thomas Frazier and Katie Huba: Groundbreaking research to understand the cognitive and behavioral patterns of WDR26 patients
Discover the groundbreaking strides being made in research on the WDR26 mutation as I talk to Dr. Thomas Frazier and his Research Coordinator, Katie Huba. This episode takes us through a new path towards understanding and improving the lives of...
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32:01
Laura Johansen: Triumphs, Challenges, and Hope in Raising a Rare Child
On this episode of Smiles Included, we sit with Laura Johansen, a resilient mother who shares her heartfelt experiences of raising her 21-year-old son, Duncan, who has only recently been diagnosed with Skraban-Deardorff. We dive into the ...
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Season 2
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Episode 2
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1:01:39
Jackie and Eddy Jones: A rare disease journey of hope, resilience and vulnerability.....and a golf tournament!
Today, we're shining a light on a family's journey with their SKDEAS kid and the strength that it has carved out in them. Meet Jackie and Eddie Jones, the remarkable parents of Travis, who open their hearts to us about their path to diagnosis, ...
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Season 2
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Episode 1
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1:05:08
Allison Pyer: Unraveling the Complexities of the Neurotypical-Neurodiverse Connection
In today's podcast, I have the pleasure of interviewing my twin sister, Allison Pyer, whom I'm very close to. Both of us have two children each, and her youngest son and my SKDEAS son were born within two weeks of each other. As you can imagine...
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Season 1
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Episode 12
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50:59
Kristen Worrell: Navigating the uncertainty of the SKDEAS spectrum
In this episode, I speak with Kristen Worrell. Kristen is the amazing mom of two young children, one of which has Skraban-Deardorff Syndrome. Kristen talks to us about what the diagnosis means for Lynnie, who truly is a little supe...
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Season 1
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Episode 11
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56:20
Rare Disease Day 2023
This episode is being published on February 28th, otherwise known as Rare Disease Day. This is the day we speak a little louder than normal on behalf of those impacted by Skraban-Deardorff. There are over 300MM people impacted by...
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Season 1
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Episode 10
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13:16
Andrew Houser: A SKDEAS superhero talks to us about what the diagnosis has meant to him and impacted his life
I'm so excited for this episode - we are hearing directly from one of our SKDEAS superheroes! Andrew Houser was diagnosed with Skraban-Deardorff two years ago at the age of 17 and he tells us what having a diagnosis means to him and the i...
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Season 1
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Episode 9
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36:38
Yelena House: Reminding us that raising a SKDEAS kid is a marathon, not a sprint, and our kids will constantly surprise us
Hi everyone! Please enjoy my conversation with Yelena House as she talks about her son, Andrew. Andrew went most of his life without a diagnosis and is now a thriving 19-year-old that is proud to be part of the Skraban-Deardorff com...
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Season 1
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Episode 8
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43:38
Sherri Blaik: Helpful tips for success at potty training our rare children
Help!!! I've been struggling with potty training and fearing what happens if I don't have success. It's a scary world out there for anyone with special needs and having access to a bathroom that will allow for the dignity of our fam...
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Season 1
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Episode 7
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14:24
Sherri Blaik: Demystifying the ABA experience and other therapies that have benefitted her SKDEAS daughter
For those of you at the family conference, you definitely remember meeting Allie as she led us in some of the dance parties. Her mom joins us for this latest podcast to discuss the therapies that have worked for Allie throughout the years...
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Season 1
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Episode 6
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42:51
Sebrina Harrell: A glimpse into the life of a SKDEAS teenager, including managing seizures and impacts on the parents
Sebrina Harrell is a supermom to 17-year-old John, who has two rare diagnoses - including Skraban-Deardoff Syndrome. Sebrina walks us through how John is impacted and what it means for his daily life. I peppered her with tons of que...
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Season 1
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Episode 5
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36:57
Bailey Wallace: The sibling experience and being at peace with the diagnosis.
The family conference was two weeks ago and it was amazing! My theory is that siblings of special needs children are amazing human beings and my guest on the podcast, Bailey Wallace, proves that to be a fact. She has a daughter wit...
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Season 1
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Episode 4
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45:02
Lisa Patterson: Raising a SKDEAS teenager and the importance of self-care
Do you ever wonder about the future of our recently diagnosed kids? Or what it what like for the parents that came before us that didn't have the benefit of a diagnosis for most of their child's life? Me too! Lisa Patterson i...
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Season 1
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Episode 3
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43:52
Emily Gerst: A conversation about the impact of the Skraban-Deardorff diagnosis and advocating for our children
SMILES INCLUDED: EPISODE 2Emily Gerst is the mom to Cecilia, an 8-year-old girl with Skraban-Deardorff Syndrome. We had a great conversation about the impact of getting the diagnosis and what it has meant for our children. E...
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Season 1
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Episode 2
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55:33
Cynthia Lang: Skraban-Deardorff mom working to find a treatment for her son
Welcome to our first podcast! Ignore the sound issues...we can only go up from here! But it will be hard to beat my first guest, Cynthia Lang. Cynthia is a mom to a son that was recently diagnosed with Skraban-Deardorf...
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Season 1
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Episode 1
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39:22