PINK Revolution of NH’s Post

A difficult but important conversation to have. #SUDEPActionDay2024 #OurRisksOurRights #empowerparents #patientsfirst #SUDEP #cureepilepsy

Really useful tips and epilepsy awareness!

No one should have to deal with Alzheimer’s alone. The government agencies, nonprofit groups, and other resources listed here can help people with Alzheimer’s and their caregivers cope with the disease through education, advocacy, support services, clinical trial opportunities, and blogs that share the wisdom of lived experience. https://bit.ly/3BxZftm

This weekend, stepping away from my daily responsibilities again, I had the privilege of #volunteering at a walk for cancer patients, where individuals with cancer or in remission could spend time with rescue dogs 🥰🐕 Reflecting on my journey with chemotherapy, I am truly grateful for the support from friends, family, and everyone at GETT. Their gestures range from a 19-hour-long playlist filled with songs they added, to thoughtful gifts, home-made food and over 100 heartwarming postcards. Someone even gifted me A BIKE, which motivated me to cycle a total of 164K between chemo treatments. Additionally, I managed to walk a total of 364K. Looking back, it seems impossible! But in a way, I'm just proof that an unbreakable support system results in a healthy mind and a strong will - drawing energy from places you didn't know existed. ☀️ This is my story, but the truth is.... 🌧️ ...that many patients are not comfortable sharing their story with potential supporters. Many don't have family nearby, some have few friends, and others have temporarily moved to Houston to receive the best treatment but don't have the means to bring their children and pets. Whatever we need, let’s not underestimate the impact of our networks. Today, I am reminded of the significance of empathy, including in the workplace. At GETT, we strive to create an environment where support & solidarity extend beyond our roles, influencing not only how we interact within our team but also how we engage with the broader community. 🫶🏼 Whether it’s through a simple act of kindness or a shared moment of understanding, we have the power to make a difference in the lives of those around us. #corporatesocialresponsibility #raisingawareness

SUDEP Action Day - October 18, 2024 🧡 Today holds a deeply personal meaning for me. Six years ago, I lost my sister to SUDEP (Sudden Unexpected Death in Epilepsy) at the age of 33. It was a devastating and unexpected tragedy that changed our lives forever. SUDEP Action Day is about raising awareness so that others don’t have to experience the same loss. SUDEP is still not widely understood, but it affects too many families. People with epilepsy, especially those with uncontrolled seizures, are at risk. By spreading awareness and knowledge, we can help prevent these heartbreaking deaths. In honor of my sister and all those we’ve lost, I want to encourage everyone to take action: ✨ How You Can Help: Educate Yourself: Learn more about SUDEP and how it affects people with epilepsy. Talk About It: Start conversations with friends, family, and healthcare professionals about SUDEP and epilepsy risks. Support Research & Advocacy: Donate to organizations working to prevent SUDEP and improve epilepsy care. 🧡 Together, we can make a difference and save lives. Let’s spread the word, share stories, and push for more awareness, support, and change. In loving memory of my sister and all those gone too soon 💜 #SUDEPActionDay #RememberingMySister #EpilepsyAwareness #StopSUDEP #TakeAction

Today is World Alzheimer's Day, dedicated to raising awareness and showing support for those affected by this challenging condition. 💜 Did you know Alzheimer's disease is the most common cause of dementia, affecting millions of people worldwide? It's a devastating disease, but together, we can make a difference through research, advocacy and support. How can you help? 🧠Learn more: Visit the Alzheimer's Association® website (https://loom.ly/mGMHcZk) to learn about the disease, its symptoms, and how you can get involved. 🟣Show your support: Wear purple today to raise awareness of World Alzheimer's Day. 🙌Volunteer or donate: Consider volunteering your time or making a donation to one of the organisations dedicated to providing support and services to those affected by Alzheimer's. 📢Spread the word: Share this post and help us raise awareness about Alzheimer's disease. Together, we can make a difference and create a brighter future for Alzheimer's disease patients. #WorldAlzheimersDay #endalz #CDMO #AlzheimersAwareness

“Assume That I Can": A Groundbreaking PSA for World Down Syndrome Day 🌎 Yesterday, I stumbled upon a profoundly moving PSA on TikTok that stopped me in my tracks. Created by nonprofit Coordown for World Down Syndrome Day, the campaign is aptly titled "Assume That I Can." In just a few short moments, the PSA challenges the negative assumptions society often holds about individuals with Down syndrome. It powerfully reminds us that these assumptions can shape how we treat others, ultimately shaping their reality. What makes this campaign truly exceptional is its ability to reverse our perspectives. Instead of focusing on limitations, it urges us to see the potential, capability, and humanity of every individual, regardless of ability. In a world where awareness campaigns often fall short, "Assume That I Can" stands out as a beacon of empathy, understanding, and inclusivity. It's a reminder that by shifting our mindset, we can create a more inclusive and compassionate society for all. Kudos to Coordown for creating such a powerful and thought-provoking campaign. 🧠🌟 #AssumeThatICan #WorldDownSyndromeDay #InclusionMatters #PSAoftheDay

In honor of International Huntington’s Disease Awareness Day, our Founder + Creative Director shares why supporting HDSA and HD research is at the very core of what we do and why we do it. —— My mom was an absolute badass. She spent her life fighting and advocating for her community and other people, all while navigating an unspeakable amount of personal tragedy. She’s always been my role model. When I was in college, she was diagnosed with Huntington’s Disease (HD), a rare genetic disorder for which there is no cure and that’s often described as a combination of ALS, Parkinson’s, and Alzheimer’s. Children of people who carry the marker have a fifty-fifty chance of inheriting it, and a blood test can confirm the genetic mutation. A score of 40 or above means you will, without question, develop HD. My mom’s score was 41. Mine… is 43. In getting my result, the last thing I wanted to do was give up. I was determined to refocus my life, to shed all of the anxiety and stress that consumes us as humans. I wanted to concentrate on more meaningful things, including being more present and making deeper connections. And my priorities shifted—to family and walking more intentionally with God, to serving others and living with intention. Through this refocusing I found an intense sense of clarity and purpose. With my renewed perspective, I created 43Places and began to welcome in a broader spectrum of life—the difficult alongside the beautiful, the happy amidst the heartbreak, and the resilience despite adversity. To me, 43Places is a reminder that everyone is struggling with something whether we can see it or not. We are a group of humans creating thriving neighborhoods, uplifting those in need, helping others tell their stories, and providing space for a new type of community. Our ethos is one of compassion and perseverance. And we are continually working to bring spaces and places to life in a way that connects people on a deeper level, allowing them to grow, pursue their passions, and become catalysts themselves. Steven Brooks Johnson Founder + Creative Director 43Places Please consider donating to the Huntington's Disease Society of America #43Places #LetsTalkAboutHD #HDAwarenessDay #HDAwarenessMonth #FamilyIsEverything

🌟 Strength in Community: Empowering Post Kidney Transplant Individuals 🌟 We recognize the importance of community in every stage/phase of life and that is why we at the Arike Kidney Foundation have come together to create a community for post-kidney transplant individuals. In our community, we find solace, support, and shared experiences. 💚 🤝 Together We Thrive: Our community is a source of strength and resilience. We uplift each other through the highs and lows, knowing that no one walks alone. 💬 Shared Stories, Shared Strength: In our shared experiences lie invaluable lessons and unwavering support. Every story shared enriches our collective journey. 🌱 Nurturing Growth: Through encouragement and understanding, we nurture growth and inspire hope. Together, we embrace the possibilities of life post-transplant. 👏 Celebrating Victories: From milestone anniversaries to everyday triumphs, we celebrate each other's victories, knowing the courage it takes to persevere. 💙 Connected by Hope: In our community, hope is our common thread. It binds us together, reminding us that brighter days are always within reach. Let's continue to uplift, inspire, and support one another on this incredible journey. Together, we're stronger. Together, we thrive. 💪🌟 #CommunitySupport #PostKidneyTransplantJourney #StrengthInUnity #PostKidneyTransplantLife

There's no instruction manual for living with Multiple Sclerosis... No week-by-week guide for what you can expect going forward. It's a figure it out as you go along diagnosis... and it's different for everyone. Don't ask me how, but the day I got the official diagnosis from the neurologist, I did a coffee chat on Product Management with Patty Aluskewicz. Why? Was that still the most important thing to do? No, but I had made a commitment (or in denial), there were 30+ people signed up to attend, and I wasn't going to let people down. I don't remember much about the talk. I couldn't tell you how good it was. Yes, it's online, you can watch it and decide for yourself, but as of yet, I haven't wanted to review it. It is what it is. What I can tell you, being diagnosed with MS has changed my life. Mostly additional doctor appointments and way too many MRIs. I've learned how resilient (or maybe stubborn, what's the difference) I am. I still go to work every day, even on days when I'm spending 6 hours in the infusion chair, I'm there with my laptop, getting work done. I still run. Slower, yes, the best form, no, bruised toes, yes, but I'm still out there doing it. Honestly, my biggest challenge is my DLM (not going to explain here). Why am I sharing this? March 30, 2024, is World Multiple Sclerosis Day, and as someone living with MS, I want to get the word out there. If you read this far, I'd really appreciate it if you supported me in Walk MS. https://lnkd.in/eQ6peVaZ I'm also journaling my life with MS (link in the comments) if you'd like to follow along and learn more. #MSAwareness #MSWarrior