EmpiRx Health’s Post

#LetsTalkAboutHD with Molly Kokesh and the Rocky Mountain Chapter Why celebrating hope is so important in Colorado and beyond! Spring in the Mountain West feels like a series of stops and starts - 70 degrees, then 6 inches of snow; buds on trees, followed by frozen tomato plants. Every week, there is hope that winter is behind us and an equal reminder that it is not just yet. Following research for effective treatments for Huntington's disease feels much the same way. Some years bring wins - sometimes big - while others bring significant disappointment. But "where there is hope, there is life." That is what the Celebration of Hope is all about. The focus is not on what this devastating disease is or isn't, but on how our families are strong, resilient, caring, and bold. It is a celebration of the strength of HD families. I look forward to it every year, and, now, so do many of my family members and friends. When we come together as an HD community to celebrate the progress we've made, the community we've built, and the hope we have for tomorrow, we grow more hope. If you are in the state of Colorado this weekend, join Molly and the Rocky Mountain Chapter to raise a glass - or a fork - to our past, our present, and our future. Use the link below to find out more about the 2024 Celebration of Hope: Wine & Shine: https://lnkd.in/erDqDW96 To learn more about #HuntingtonsDisease & the #HDSAFamily, please visit https://hdsa.org/ #HDAwarenessMonth #LetsTalkAboutHD #HDSAFamily #FamilyIsEverything #HuntingtonsDisease

Today’s my birthday—will you celebrate with me? 🎉 But instead of gifts, I’m asking for something different: A chance to rethink how we approach life by starting with death. When my mom died, I realized how unprepared most of us are for death—not just logistically, but emotionally. We don’t want to talk about it, let alone accept it. Years later, that experience inspired me to become a death doula and open a hospice, where I was again confronted with the fact that we live in a death-denying society. Through all of this, I realized something: Even if we have the best tools in the world to prepare for death, no one will use them if they aren’t comfortable thinking or talking about it. That’s where Hello, Mortal comes in. I’m on a mission to create space for these conversations, make death less intimidating, and empower you to use it—like many ancient cultures have—as a guide to live more fully. Here’s how you can celebrate with me—and support this mission: 1️⃣ Expand your horizons. Explore books that deepen your understanding of mortality or help someone else on their journey. Check out my recommendations here: https://lnkd.in/exX2ureq 2️⃣ Join the movement. Become a paid (or free!) member of Hello, Mortal and join a community reimagining how we approach death—together. Sign up here: https://lnkd.in/e5ThJGUu 3️⃣ Discover your Death Archetype. Take the test, reflect on your relationship with mortality, and share it with someone you care about. Start here: www.deatharchetypes.com None of us can escape death, but we can use it to create a life filled with meaning, joy, and connection while we still have time. 💀 Memento Mori, Memento Vivere🍾

Get your puppy fix at #NatCon24 in STL!

Here is a new book with our chapter on Empowered Aging as a means to preventing compassion fatigue. Enjoy.

This is an incredibly inspiring story. Stories like these serve as a reminder of the importance of our mission to safeguard and support 💪🏼. Let us always lead with our hearts ❤️ and prioritize moments like these. Given the escalating rates of workplace violence in the healthcare sector, what measures do we have in place to prevent negative or even violent interactions and ensure that positive experiences prevail? How are we advocating for the protection of our healthcare heroes? 🦸♀️ 💪🏼 #healthcareheros #endingworkplaceviolence #workplaceviolence #ishss #workplaceviolenceprevention

If you said YES to any of these questions, we have what you need: IFS Community Group Over the course of 8 weeks, this affordable, group healing experience is perfect for those new and familiar with IFS. You’ll learn from some two incredibly experienced and brilliant practitioners and experience the transformative power of healing in community. Will you join us? Link in bio to learn more and sign up! #internalfamilysystems #IFStherapy #healingcommunity #ifsgroup

#GivingTuesday is less than a week away. This year I am once again asking for support for the one organization that has changed my life so much over the past 5 years. Barth Syndrome Foundation. Your support has been instrumental in allowing us to: -Research and Develop medications -Send myself and 20 others to Washington DC for Rare Disease Week -Attend 109 meetings with State Reps on fighting for fair and equitable review processes of ultra-rare diseases -Fund Biennial Conferences in which patients and providers from all around the world meet to learn about Barth Syndrome and conduct research tests --Attend the first FDA Advisory Committee meeting on the only drug to pass through trials - Elamipretide - in which we received a 10 to 6 vote in favor of approving the medication We have come such a long way considering we are a community of approximately 150 affected individuals in the United States. Your support is always greatly appreciated and helps us so much in our steps to finding hope for a cure in the future. #ultrarare #mitochondrial #Barth #raredisease #research #hope #FDA #Elamipretide #StealthBiotherapeutics https://lnkd.in/eBKcMfM5

Good Energy is the #1 selling book in America. 🥹 Writing this with Casey Means, MD has been one of the most meaningful experiences of my life. We decided to embark on the effort shortly after our mom died in 2022 of a preventable metabolic condition - another casualty of a system that is incentivized to ignore the warning signs of metabolic dysfunction. In 2022, I started tweeting ideas from the book, which led to connecting with Justin Mares about our shared passion for reforming health incentives. These conversations led to Truemed. This book explains the science and reasons behind the biggest issue in the world - the metabolic health crisis that is the root of 9 of the 10 leading causes of American death. Most importantly, through Casey's genius, the book outlines an actionable path forward for how the reader can feel better today and prevent disease tomorrow. This is a book of optimism - with the foundational premise that solutions to our chronic disease crisis are simpler than we're led to believe by a system that profits from siloing and complexity. Thank you to everyone for the support on this journey.

"We desperately don't want to experience shame, and we're not willing to talk about it. Yet the only way to resolve shame is to talk about it" Brene Brown Yesterday's Rebellious Health newsletter is about some of the barriers and the stigma healthcare professionals experience when they too need help. For years I was my own worst enemy. Ashamed, burying and suppressing what I felt whilst wearing an effective mask at work so no one else would know, comparison-itis and internally feeling as though I was a failure for not thriving in the system. Letting go, leaning into vulnerability, breaking down these barriers and healing through 'rebellious' modalities that aren't mainstream in our healthcare system (but very much should be) has all been part of the long journey to where I am today. I'm passionately angry about what the healthcare system is doing to break so many caring and dedicated professionals. I'm worried about the exodus of clinicians. I believe there is a wealth of untapped creativity, innovation and ideas actively being suppressed. Rebellious Health is here to address these concerns with an innovative and disruptive idea that could reignite purpose, and reimagine a new healthcare ecosystem. What barriers have you faced trying to help yourself? What do you think needs to change to combat these barriers? #burnout #nhsworkforcecrisis #healthcareprofessionals #rebellioushealth

Gratitude is at the heart of this Thanksgiving Season. 🍂💛 At IsraelPharm, we’re thankful for the opportunity to help families access the medications they need. Now it’s your turn—what are you grateful for this year? 📝 Share your thoughts in the comments below and let’s spread some positivity together! 💬✨ Need some inspiration? Check out our latest blog:Thankful for Health: How Gratitude Supports Your Well-Being #Thanksgiving #Gratitude #WhatAreYouGratefulFor #IsraelPharm #SpreadPositivity"