Project CASK Podcast
autor: Project CASK
Nejnovější epizoda
[The Roar Ep. 10] Banana Splits & Big Dreams... Making A Splash For…
[The Roar Ep. 10] Banana Splits & Big Dreams... Making A Splash For…
O tomto podcastu
The Project CASK Podcast is a place for the CASK community to gather to share our stories, deepen our connections, learn from each other and from others, and hopefully find laughter and joy as we travel this rare disease journey together.
Epizody
Nejnovějších 20 z 21 epizod
- [The Roar Ep. 10] Banana Splits & Big Dreams... Making A Splash For CASK gene disorders · 19 minAugust is here — and so is Make a Splash for CASK, our annual global fundraiser to raise awareness and fuel therapeutic development for CASK gene disorders. In this episode of…
- [ The ROAR Ep. 9 ] Gene Therapy updates and community action plan · 22 min · Řada 2 Epizoda 9🎙️The latest episode of the ROAR is here, full of exciting updates and real ways you can help move the needle for the CASK community. https://youtu.be/X3DoyBRXUoU Here’s what’s…
- [ The ROAR #8 ] 2025 March Updates · 13 minThe latest episode of [ The Roar ] is here! This episode, we’re diving into: 🩵💜🩷 A huge thank you to our community for your incredible Rare Disease Day advocacy—your voices…
- [TheROAR #7] 2025 Project CASK Announces Calendar Of Events · 15 minWe have an exciting year ahead, and look forward to sharing it with you! Listen in as Hitomi Kubo shares in more detail, on what’s to come in 2025… Feb - Roar For Rare! Share…
- [The ROAR #6] Project CASK’s WHY · 15 minHappy New Year, CASK community! We’re back with a new episode of the ROAR 🦁🎧 your one-stop for research-related information and other happenings in the CASK community.In this…
- [The ROAR #5 ] 2024 Open House Overview · 12 minIn this episode, Hitomi provides an overview of where we are and why on our roadmap to treatments and a cure, shared at last weekend's Project CASK Open House!Hear about:🤝 Step…
- [The ROAR #4] PC Announces Gene Replacement Therapy Grant Award · 7 min📣 More details on the gene replacement study being funded by Project CASK! 🧬We recently shared that Project CASK is awarding a two year $375 thousand dollar grant to support the…
- [The ROAR #1] PC has launched first RFA! What's next? · 6 min · Epizoda 1We’ve launched our first Request for Applications (RFA)! What’s in it and what’s next? Check out this message from Hitomi Kubo of Project CASK, breaking down the basics of this…
- Ep. 11 Slowing down and enjoying the small moments, with CASK mum Louis Konz · 47 min · Řada 2 Epizoda 11Grab a cup of hot tea and a cozy blanket for this intimate conversation with Australian CASK mum, Louis Konz. Mother to sixteen year old Bethany who received her diagnosis…
- Ep. 10 A Father's Day Love Letter · 11 min · Řada 2 Epizoda 10Join in this collective community effort and honor our fathers and father figures, who support us and our families on this CASK journey.
- Ep. 9 Let's talk intensive therapies! With Stefanie Trask · 43 min · Řada 2 Epizoda 9Our special guest today is Stefanie Trask, mama to the absolutely adorable Ellie and the sweetest big brother, Bo. Lately, we’ve had many questions from newly diagnosed parents…
- [The ROAR #3] Partnerships overview: JAX Labs & COMBINEDBrain · 5 minIn this episode, Hitomi highlights Project CASK’s two exciting new partnerships — the Rare Disease Translational Center at Jackson Laboratory and Combined Brain — and the…
- [The ROAR #2] PC announces CASK focused epilepsy study in partnership with Cornell/NYPresbyterian Hospital · 4 minOn this episode of The ROAR, we are thrilled to share the news of an upcoming epilepsy and seizure study! This study titled, “Identifying biomarkers for epilepsy in patients…
- Ep. 8 A short guide on the ketogenic diet for epilepsy · 49 min · Řada 2 Epizoda 8This week we talk with neurologist Dr. Laurie Seltzer, registerd dietitian Leean Habben, and CASK gene mama Christine Phillips regarding the ketogenic diet, and it's positive…
- Ep 7: You feel like home; mothers connect at the We Are Brave Together retreat · 45 min · Řada 1 Epizoda 7This week we have CASK mamas Rachel Alves, Amanda Ruebusch and Alexis Taylor. These three mamas did something probably most of us dream about but don’t manage to do. They…
- Ep 6: Creating Independence and Happiness with Christine Phillips · 56 min · Řada 1 Epizoda 6Today our special guest parent is Christine Phillips, mama to Emmy and Andy… Being such a small community, it’s probably the case that our children are all unique. But in that…
- Ep 5: A Father's Day Love Letter · 26 min · Řada 1 Epizoda 5Today, June 18th, we celebrate Father’s Day in Chile, France, Ireland, Lebanon, the Netherlands, Nigeria, the Philippines, Russia, the United Kingdom, the United States and so…
- Ep 4: Reframing Your Mindset with Allie Dowell · 40 min · Epizoda 4We are so happy to have CASK mama Allie Dowell on the podcast! Allie has a particularly unique position as a mom of a boy with cask, a carrier herself, an early intervention…
- Ep 3: You Are Not Alone with Rachel Alves · 45 min · Řada 1 Epizoda 3This episode is dedicated to all the beloved ones we have lost in our cask community. Their names will forever be in our hearts, and on our minds. Spoken in our homes, our…
- Ep 2: Worry About Tomorrow, Tomorrow - with Emily Stiglitz · 37 minJoin us as we chat with Emily Stiglitz, mama to two year old Sophie! We talk about the ups and downs of a new diagnosis, and learn a little more about her journey. Enjoy this…
