Shows
Smiles Included: Navigating through life with our rare disease superheroesCynthia Lang: Inspiring Progress in SKDEAS Research & TreatmentsGet 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 fo...
2024-09-1028 minSmiles Included: Navigating through life with our rare disease superheroesDr. Thomas Frazier and Katie Huba: Groundbreaking research to understand the cognitive and behavioral patterns of WDR26 patientsDiscover 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 those affected by rare genetic conditions. Dr. Frazier talks to us about his new study that leverages parent-reported questionnaires and innovative webcam assessments to unravel the cognitive and behavioral patterns in individuals with Skraban-Deardorff Syndrome. Research into rare diseases often brings a mix of apprehension and optimism. Here, we tackle the details of study participation, addressing the el...
2024-03-2932 minSmiles Included: Navigating through life with our rare disease superheroesLaura Johansen: Triumphs, Challenges, and Hope in Raising a Rare ChildOn 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 early days marked by febrile seizures and delayed development and follow her journey through the complexities associated with this rare condition. We touch upon Duncan's speech development, school and sports experiences, family dynamic and friendships. Laura provides great advice for what has worked for her and Duncan along the way. It's a unique perspective on the joys, challenges, and hopes of r...
2023-11-291h 01Smiles Included: Navigating through life with our rare disease superheroesJackie 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, the challenges they've faced, and the bonds they've built.We journey with Jackie and Eddie as they navigate the complexities surrounding Travis's diagnosis. We unpack the medical challenges, such as tracheomalacia and eosinophilic esophagitis, that have become a part of their lives. We also step into the shoes of the Jones family as t...
2023-08-171h 05Smiles Included: Navigating through life with our rare disease superheroesAllison Pyer: Unraveling the Complexities of the Neurotypical-Neurodiverse ConnectionIn 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, we had hoped that they would grow up together, reach their developmental milestones at the same time, and become the best of friends.However, life didn't unfold exactly as we had envisioned it, and we've never had an opportunity to discuss how our children feel about each other, until now. In...
2023-05-1650 minSmiles Included: Navigating through life with our rare disease superheroesKristen Worrell: Navigating the uncertainty of the SKDEAS spectrumIn 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 superhero. We talk a lot about the struggle we have with the unknown of the SKDEAS diagnosis due to the large spectrum of impact to our kids. We discussed all of the therapies that our children endure each week and how we are constantly questioning if we are doing too much or not enough. I think a lot of parents will...
2023-03-2956 minSmiles Included: Navigating through life with our rare disease superheroesRare Disease Day 2023This 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 rare diseases worldwide, with 72% of them being rare genetic diseases like SKDEAS. Sometimes we feel small and alone and this day pulls all rare families together to drive awareness of the importance of fighting for treatments and better lives. So I’m doing something a bit different on the podcast today and featuring two guests that h...
2023-02-2813 minSmiles Included: Navigating through life with our rare disease superheroesAndrew Houser: A SKDEAS superhero talks to us about what the diagnosis has meant to him and impacted his lifeI'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 importance of the support of the SKDEAS community. Andrew was very open about his life and where he sees himself after he completes school. For many in our community, this is the first time hearing from someone that has been diagnosed with SKDEAS. A huge thank you to Andrew for giving a voice to our...
2022-12-1236 minSmiles Included: Navigating through life with our rare disease superheroesYelena House: Reminding us that raising a SKDEAS kid is a marathon, not a sprint, and our kids will constantly surprise usHi 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 community. Yelena shared lots of stories from Andrew's life and reminds us that we should never underestimate our rare kids since they are constantly surprising us with what they can achieve. I said many times throughout this conversation that Yelena and Andrew fill me with hope for our SKDEAS kids. Please visit SKDEAS.org for more information about...
2022-09-2943 minSmiles Included: Navigating through life with our rare disease superheroesSherri Blaik: Helpful tips for success at potty training our rare childrenHelp!!! 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 family members is not easy to find. I hope this podcast will help some of our community.Sherri presented how she successfully potty trained her SKDEAS daughter at the 2022 Family Conference and was nice enough to walk us through it again for the podcast. It's definitely intense and requires a lot from the caregivers, but it was...
2022-09-0714 minSmiles Included: Navigating through life with our rare disease superheroesSherri Blaik: Demystifying the ABA experience and other therapies that have benefitted her SKDEAS daughterFor 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, including ABA therapy. I've had a lot of questions about ABA, so Sherri walked me through what the therapy looked like for Allie and how it helped in overall development. I hope you find this interview as helpful as I did!skdeas.orgPlease visit SKDEAS.org for more information about Skraban-Deardorff and...
2022-09-0742 minSmiles Included: Navigating through life with our rare disease superheroesSebrina Harrell: A glimpse into the life of a SKDEAS teenager, including managing seizures and impacts on the parentsSebrina 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 questions, and she gives great insight into managing seizures, handling certain behaviors and overall development. I found it fascinating to hear her discuss John's journey as he gets older and how it impacts the lives of the parents as well.skdeas.orgsmilesincludedpodcast@gmail.comPlease visit SKDEAS.org for more information about Skraban-Deardorff and...
2022-08-2836 minSmiles Included: Navigating through life with our rare disease superheroesBailey 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 with SKDEAS, plus two other kids that are extremely supportive. She talks through the exhaustive job of balancing life with three kids and ensuring they all lead full lives. Bailey may be the most positive person i've spoken to about this diagnosis, so I hope her talking about her struggles to get to the positive place can bene...
2022-08-1445 minSmiles Included: Navigating through life with our rare disease superheroesLisa Patterson: Raising a SKDEAS teenager and the importance of self-careDo 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 is the mom to a 17-year-old daughter with Skraban-Deardoff Syndrome and she talks about what it was like to raise her daughter pre-diagnosis and the life of her daughter now, as well as where she sees her daughter in the future. She tells us some great stories and gives great advice - including the importance of caring for...
2022-07-2443 minSmiles Included: Navigating through life with our rare disease superheroesEmily Gerst: A conversation about the impact of the Skraban-Deardorff diagnosis and advocating for our childrenSMILES 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. Emily shared stories about Cecilia that highlighted the personality of the little girl behind the diagnosis and I shared some similar stories about Joe. We are just two rare mamas raising our kids as best we can and sharing some advice…and hopefully some inspiration…for other parents going through similar experiences. Cecilia even tells us a joke in this pod...
2022-07-0755 minSmiles Included: Navigating through life with our rare disease superheroesCynthia Lang: Skraban-Deardorff mom working to find a treatment for her sonWelcome 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-Deardorff and we had a great conversation about what the diagnoses has meant for her family and how it has set her on a path to find a treatment for this rare disease. She has partnered with a company called Rarebase (rarebase.org) that is leveraging cutting edge technology to potentially help all the kids diagnosed with Skra...
2022-06-1639 min
The StoryTinkerWitcher Season 2 Episode 7: Voleth Meir // with Alyssa from Breakfast in BeauclairWelcome to our episode by episode analysis of The Witcher, where we focus on character psychology and relationships.
𝘕𝘰𝘵𝘦: 𝘞𝘦 𝘵𝘳𝘺 𝘵𝘰 𝘴𝘵𝘢𝘺 𝘸𝘪𝘵𝘩𝘪𝘯 𝘦𝘢𝘤𝘩 𝘦𝘱𝘪𝘴𝘰𝘥𝘦 𝘵𝘰 𝘢𝘷𝘰𝘪𝘥 𝘴𝘱𝘰𝘪𝘭𝘦𝘳𝘴 𝘧𝘰𝘳 𝘧𝘶𝘵𝘶𝘳𝘦 𝘦𝘱𝘪𝘴𝘰𝘥𝘦𝘴, 𝘢𝘯𝘥 𝘸𝘦 𝘵𝘳𝘺 𝘯𝘰𝘵 𝘵𝘰 𝘤𝘰𝘮𝘱𝘢𝘳𝘦 𝘵𝘩𝘦 𝘛𝘝 𝘴𝘩𝘰𝘸 𝘸𝘪𝘵𝘩 𝘵𝘩𝘦 𝘣𝘰𝘰𝘬𝘴. 𝘞𝘦 𝘢𝘭𝘴𝘰 𝘨𝘳𝘰𝘶𝘱 𝘵𝘩𝘦 𝘦𝘷𝘦𝘯𝘵𝘴 𝘪𝘯 𝘦𝘢𝘤𝘩 𝘦𝘱𝘪𝘴𝘰𝘥𝘦 𝘣𝘺 𝘴𝘵𝘰𝘳𝘺𝘭𝘪𝘯𝘦.
Rience watches idly as Lydia's face gets burnt off; there is trouble between Triss and Vilgefortz in Aretuza paradise; and Fringilla makes a plea to Artorius.
Fringilla and Fransesca's friendship falters; I defend Cahir yet again; and someone kills the elven baby.
Jaskier sings an awesome song and tells Geralt off; Yarpen decides to join Geralt on a secret mission.
Yennefer and Ciri travel to Cintra for Yennefer's act of betrayal; Ciri screams, Geralt arrives, and he and Yennefer share a very loving moment at opposite ends of a sword.
Also, the evil witch escapes at the last minute. Bad deal.
𝗟𝗶𝘀𝘁𝗲𝗻 𝘁𝗼 𝗕𝗿𝗲𝗮𝗸𝗳𝗮𝘀𝘁 𝗶𝗻 𝗕𝗲𝗮𝘂𝗰𝗹𝗮𝗶𝗿 𝗮𝗻𝗱 𝗳𝗼𝗹𝗹𝗼𝘄 𝘁𝗵𝗲 𝗽𝗼𝗱𝗰𝗮𝘀𝘁 𝗼𝗻 𝘀𝗼𝗰𝗶𝗮𝗹 𝗺𝗲𝗱𝗶𝗮!
https://www.breakfastinbeauclair.com/ https://podcasts.apple.com/us/podcast/breakfast-in-beauclair/id1475425783
https://open.spotify.com/show/65CBfGj0hY0BPADXYz6CWc
https://www.instagra...
2022-04-131h 53
BFL PodcastThose take up a ton of timeJamie and Emily rec some podcasts and do a quick summer wrap up as we get ready to slide into September..
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Things in this episode:
Doctor Sleep by Stephen King
Mr. Mercedes by Stephen King
The Penumbra Podcast by Sophie Kaner & Kevin Vibert
Whispers of Oxenfurt by Brett
Breakfast in Beauclair by Alyssa
Wooden Overcoats by David K. Barnes
Greater Boston by Alexander Danner and Jeff Van Dreason
The White Vault by K. A. Statz
2019-08-2131 min