Podcasts about disorder channel

ONCE UPON A GENE - EPISODE 212 Special pop up episode from our friends Daniel DeFabio and Bo Bigelow from the Disorder Channel - Pain Points https://www.rarediseasefilmfestival.com/ www.thedisordercollection.com https://www.facebook.com/rarediseasefilmfestival https://www.instagram.com/disorderrarediseasefilms/ https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/ DISORDER: The Rare Disease Film Festival

Imagine a world where your child has a rare disease that's so rare, it doesn't have a name and only a handful of people around the world have a similar condition. It can leave you feeling helpless and alone knowing the odds are stacked against you.  This is the situation Bo Bigelow experienced with his daughter, Tess. She suffers from a USP7, a neurodevelopmental disorder that impacts her motor function, speech, and bone development. Tess' condition left Bo looking for help… and he found a lot of other patients and families with other ultra-rare diseases that wanted to share their stories too. Today, Bo's initiatives have given hope to other people and help them find strength in knowing they're not alone.  Join us as we discuss the ways Bo documented his daughter's journey, learn more about USP7-related diseases and their impact, how Bo created the Disorder Channel as a way for other rare disease patients to tell their stories, what progress is being made to learn more about Tess' condition through the Foundation for USP7-Related Diseases, and how you can help advance their research.  Show Notes Rare Disease | Charles RiverFoundation for USP-7 Related DiseasesStronger Every Day BlogStronger Every Day PodcastThe Disorder Channel  

Happy (almost) Father's Day to all you incredible Dad-vocates out there. This week I spoke with one exceptional Father, Daniel DeFabio, that saw the injustice of the rare disease world after his son Lucas, was diagnosed with Menkes Disease and decided to take action. Daniel has made a career out of spreading awareness and honoring his son's memory as a rare disease advocate. He co-founded Disorder, the rare disease film festival, as well as the Disorder Channel, is a writer and blogger in residence for Courageous Parents Network, and is the Director of Community Engagement at Global Genes.  I truly appreciated how open, honest, and real he was during our conversation.  We talk about everything from diagnosis, stages of grief,  his career transition to advocacy, how he's making an impact on the rare disease world, what role hope plays in his life, and so much more. Happy listening, friends! Daniel's social links: https://www.facebook.com/rarediseasefilmfestival https://www.instagram.com/disorderrarediseasefilms/https://www.linkedin.com/company/disorder-the-rare-disease-film-festival/https://twitter.com/DisorderRareRead Daniel's thoughts on hope here.Learn more about the Disorder Channel here.Learn more about Global Genes here.https://www.confessionsofararediseasemama.com/Learn more about my children's fight with ASMD and donate to our cause:https://www.saveromanandstella.com/Follow on instagram: https://www.instagram.com/confessionsofararediseasemama/

You unfortunately hear from time to time about bullying in schools. But one thing you don't hear enough about are the anti-bullies. The people working, day after day, to prevent bullying. The Cromwell Center of Maine is doing super important work. Check out episode 177, “MC,” all about Dana and his hosting of the Cromwell Center event back in 2018. Click here to listen.Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

I haven't done this in a while, but I am calling upon you, Tess Army. I need you to do something for me.Help us get more patients. You can do it. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Tess isn't feeling well. This is highly unusual.Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

What happens if you go quiet for four years? Is speaking like riding a bike?I spend a day with the fine folks at Charles River Labs. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

I take the two girls, Tess and Penny, to a dog park. It is one of Tess's least favorite locations in the greater Portland area. Ruff! Rough!Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Let's talk about diagnosis day. Daniel made a new film about that day. It's a big day, really. It's a mix of joy and grief. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Spring is in the air. I'm back from a trip, and I got some key USP7 updates for ya, including a check-in with Miss Tess. What does it mean to miss someone? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

In our house is a very large and extremely heavy object. Tess has found it utterly fascinating for most of her life. Tickling the ol' ivories. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Tess heads to the eye doctor. For a lonnnnnng appointment.How's this gonna go? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

It's the end of an era. The final shift of someone who knows Tess and has helped her immeasurably. Nothing lasts forever, right? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Counting our chickens before they have hatched. Got an update for ya this week on how Tess fared with her recent bout with Covid. Sad Tess. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Emma is a bright light in the vestibular community, currently 33 and living in Sheffield In the UK and she is the founder of Emma Leigh Yoga, where she teaches supportive, gentle yoga for people looking to support their mental and physical wellness. Her classes are perfect if you are a beginner, are struggling with stress, anxiety or chronic illness or are looking for a calming, slower flow. She is also a caring and supportive massage therapist and her focus is on promoting and providing people with a reset, rest + healing through her therapies and classes! Em has experienced chronic vestibular migraine for almost 5 years now and is no stranger to the vestibular world! She has experienced a lot over the past 5 years and one of her big passions is sharing her story and chronic illness journey to others to show that recovery is possible and so are opportunities to achieve what you want in life! In this conversation we touch on these items and so much more: ~ vertigo, balance issues, derealization, visual triggers ~ visual triggers, nutritional triggers ~ migraine brain, benefits of slow flow yoga, healing and body reset If you would like to reach to Emma: Instagram: https://www.instagram.com/emmaleighyoga/ Website to book online yoga class or massage: https://linktr.ee/emmaleighyoga YouTube Channel: https://www.youtube.com/channel/UC-6I9YvaVoRnhamUmnuoG-w If you would like to reach myself, Heather: Instagram: https://www.instagram.com/menieresmuse/ YouTube Channel: https://www.youtube.com/channel/UCaR0emfgfCVb0vPqjQcbGwQ Podcast: https://podcasters.spotify.com/pod/show/menieresmuse Email: menieresmuse@gmail.com If you would like to learn more about Vestibular Disorders Association please go to the vestibular disorder association website at www.vestibular.org To watch Season One of the Life Rebalance Chronicles docuseries go to the Disorder Channel or to the Unfixed Media website at https://unfixedmedia.com/liferebalancedchronicles#:~:text=Life%20Rebalanced%20Chronicles%20is%20a,down%20by%20a%20vestibular%20disorder Remember to love yourself, do the work, lean on this beautiful community, and lastly believe healing is possible. See you next week warriors!

A week has just been 86'd. A big, big change of plans in our house for Tess.We've been through this before.Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

B. It's the first letter of my first and last name. It's the name we all give to the plan that we pursue when the original plan isn't working out. And B also marks a new status for my partner Daniel and me, starting now. Hooray!Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8KTo listen to the top 5 most listened-to episodes of this here show, click here: http://www.portlandrootsmedia.com/stronger-every-day-blog/2023/2/28/top-5-most-listened-to-episodes-of-stronger-every-day

Two fans and a laptop. Tess discovers a new musical genre. What's the verdict?We explore Philadelphia-based band Remember Sports, specifically the track "Otherwise," from their 2018 record Slow Buzz. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

RARE MAMAS RISING- EPISODE 24  Charging the Rare Community with The Disorder Channel Co-Founder, Global Genes Director of Community Engagement, Menkes Syndrome Advocate & Rare Dad Daniel DeFabio At the age of 12 months, Daniel's first child Lucas was diagnosed with the rare disease Menkes Syndrome. After adjusting his expectations of what raising a child might look like, Daniel began telling Lucas's story with a short documentary film. That film led to Daniel Co-founding DISORDER: The Rare Disease Film Festival and later The Disorder Channel, both dedicated to spreading awareness for patient families facing rare diseases. One of Daniel's stories about Lucas won the 2015 Global Genes Rare Patient Story Award. Daniel was a pioneer of original content online (now called web series) and co-wrote and co-produced the internet's first animated series. He has created videos and marketing materials for bio-techs, hospitals, and most major movie studios, as well as American Cinematographer, PBS, TNT's “The Closer,” and HBO's “Curb Your Enthusiasm.” He has also served as a blogger in residence for Courageous Parents Network. Daniel currently works as the Director of Community Engagement for Global Genes. Engaging the rare community is his forte, indeed! Whether telling his own story or helping others tell theirs, Daniel is a magnetic force attracting, connecting, and charging the rare community.    EPISODE HIGHLIGHTS The path to Lucas' Menkes Syndrome diagnosis The Disorder Channel and its mission Why telling our stories is important Global Genes programs and resources What being in the rare community means to Daniel Daniel's best learnings for other rare parents LINKS & RESOURCES MENTIONED Daniel DeFabio  https://www.thedisordercollection.com/danieldefabiospeaker   Menkes Syndrome https://themenkesfoundation.org/research   DISORDER https://www.thedisorderchannel.com https://www.linkedin.com/company/disorder-the-rare-disease-film-festival https://www.instagram.com/disorderrarediseasefilms/ https://www.facebook.com/rarediseasefilmfestival   Global Genes https://globalgenes.org/ Courageous Parents Network https://courageousparentsnetwork.org/   CONNECT WITH NIKKI Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com

I'm a year older. Blowing out the candles on this year's cake, what's on my mind?Thanks to my wife, I was able to take some much needed time off. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

CVI stands for Cortical Visual Impairment. Tess has it, as do many people with Hao-Fountain Syndrome. But did you know that there's something you can do about CVI?What can Tess see?Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Let's hop into the car and head out, shall we? We're going on a shopping trip. Let's find Tess some new shoes.Picture Tess in the shoe store. There's a deep calm about her. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

RARE MAMAS RISING- EPISODE 23 Modeling Rare Advocacy with Thalassemia Advocate & Rare Mama Maria Hadjidemetriou   Maria was born with a rare genetic blood disease called Thalassemia, also known as Cooley's Anemia. Since the age of two, Maria has received two pints of blood every fourteen days. Today, Maria is a mother, a real estate professional, and a fierce Thalassemia advocate speaking around the world and inspiring patients to live their best lives. Maria is a published author in the American Journal of Hematology and currently serves as an Executive Board Member for Cooley's Anemia Foundation and as an Expert Patient Advisor for The Thalassemia International Federation. Most recently, Maria partnered with the global iconic beauty brand Maybelline as a model in the “We Speak” campaign for Disability Month. Maria is a model advocate, and in this episode, she speaks with strength, passion, and faith. She gives valuable insights about growing up with a rare disorder, learning to champion your disease, and living life without limitations or boundaries. She passionately shares ideas on how we can encourage our rare children to do the same!      EPISODE HIGHLIGHTS Maria's childhood and growing up with a rare disease The wisdom Maria's mother passed along to her at a young age How Maria learned to love her disease Maria's goal of turning Thalassemia into a household name Maria's advocacy work and fighting for access and equality Maria's strong faith and God's hand in her life Maria's best advice for other rare mamas   LINKS & RESOURCES MENTIONED   Maria Hadjidemetriou https://www.instagram.com/downtownmomnyc/   Cooley's Anemia Foundation https://www.thalassemia.org/   Thalassemia International Federation https://thalassaemia.org.cy/   American Journal of Hematology https://onlinelibrary.wiley.com/   The Disorder Channel https://www.thedisordercollection.com/     CONNECT WITH NIKKI   Facebook https://www.facebook.com/RareMamas1/ Instagram https://www.instagram.com/Rare_Mamas/ Website https://raremamas.com/ Email info@raremamas.com

A return to skiing. We heard about something amazing from Tess a week ago, and we had to see it for ourselves.Do we send this thing back, or what?Click here to watch my Instagram reel of Tess: https://www.instagram.com/p/CnKzFnxhsjI/Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Tess hits the slopes for another season with Maine Adaptive, her ninth year of skiing. Only this time she decides to make a massive change.When Tess lets you know what she wants, you'd better listen. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

The mud room. It's our point of departure when we leave our house. And in that room, post-Christmas, Tess unleashes a neat-o surprise.Tess knows. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8KQuick LinksGet Embed PlayerDownload Audio File

Certain handheld objects give Tess a sense of peace. They keep her from getting bored.The wonderful world of fidgets. Where can I get more of these?Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

The phenotyping study begins for our girl in Germany. How does Miss Tess do?Wrapping up a three-part series about our recent trip. I share tips and tricks! #TravelingWithAutismSpecial shout-out to Gretchen McCulloch and Lauren Gawne, hosts of the great linguistics podcast Lingthusiasm, which totally saved me while I was in the hospital with Tess. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

We explore Heidelberg, getting some z's but not a lot. And we finally meet up with the scientist who knows more about Hao-Fountain than anyone else. More about our recent trip to Germany for the USP7 phenotyping study. #TravelingWithAutismStronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Tess takes her first voyage across the Atlantic. At long last, we begin our trip to Germany for the phenotyping study.Two words: Jet. Lag. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Germany, take two. Let's go see Dr. Schaaf.Let's try this again. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Evaluations. They're a huge part of our life with Tess. They aren't really fun. If you're doing a questionnaire about your kid--to get services, Medicaid, IEP stuff--I'm with you. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

We have a birthday girl in the house. This week, Tess turns the big one-three.It's been quite a ride so far with this gal. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Tess is such a talker. Not with words exactly, but a complex system of sounds and gestures. And one thing that can sometimes cause us a bit of concern is this: when she clams up entirely.What does it mean when Tess is quiet?Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

A call for help. A bat-signal in the night sky of life with a rare disease. One man sees the signal. And he answers. Solving the toothbrush conundrum. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

What is Tess's favorite item from the lavatory? Raise your hand if you think you know the answer.An update on life with our new puppy Penny. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

It's time once again for the great powwow among experts to work on Tess's education. I'm talking, of course, about her IEP. We've been through this a few times now. It helps that we have a dream team.Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Gather round. I want to tell you a story about someone who really sees Tess.Tess's cousin is deeply interested in helping her. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Apple picking. It's not just for people who need to get out of the house with their toddlers.A fun surprise in the pumpkin patch. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Calendar invites. Rare parents get a lot of 'em. And we pretty much have to click yes every single time.Mindset is key. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

We've come a long way together, Tess Army.Stay tuned through the end of this ep for an incredible surprise from my main man Daniel DeFabio. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

There are no camps. No activities. No more summer school. What can we do in the last weeks of August, before school starts?Tess is having herself a dynamite summer.Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Our family just took our first voyage in over three years, to Montreal and Quebec. We learned a ton. And I'm back this week with some more tips about traveling with autism, so you know what worked for us on the road with Tess.Part two of two, with tips about what's been helpful for us as we travel with our Tess.Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Our family just took our first big trip in over three years, to Montreal and Quebec. We learned a lot. And I'm gonna give you some tips about traveling with autism, so you know what worked for us with our Tess.Tess did great on this voyage. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

You may know that Tess didn't walk until she was five. She wore orthotics, or braces, for years. And now, at age 12, she's back in braces.Working on helping Tess walk better. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

We play a lot of music in our house. In the kitchen, in the car, wherever. Tess is making her opinions known about certain tunes.What are Tess's current fave songs?Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Happy to tell you this week about the next phase of our search for a cure or treatment for Hao-Fountain Syndrome.You, Tess Army, are helping us, and we're grateful. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

This week, we say goodbye to a dear member of our family.When is a service dog not a service dog? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K

Our family is totally packed, ready to jet off to Germany for the phenotyping study and a massive family conference. And at the eleventh hour, there's a slight curveball. A large disappointment, but many many silver linings. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K