Richard Kadri-Langford ACIM’s Post

In an age where visibility and recognition are often the harbingers of change, it's with a sense of pride that I stumbled upon the news that the Daily Mail mentioned Myopia Focus and our Change. org campaign in their article: Warning of looming Gen Z blindness epidemic because today's children 'don't go outside as much as previous generations'. While the publication itself often stirs a mix of opinions, the importance of leveraging such platforms for raising awareness on critical health issues, like myopia, cannot be understated. Our journey at Myopia Focus has been driven by a steadfast commitment to shed light on the growing epidemic of myopia amongst children — an issue that, if left unchecked, threatens to cast a long shadow over future generations. The rise in myopia cases, attributed to a complex interplay of genetics, lifestyle, and environmental factors, calls for a nuanced understanding and approach, far removed from the temptation of sensationalism. The article in the Daily Mail underscores a concerning 46% increase in myopia cases in the UK over the last three decades. It's a statistic that serves as both a wake-up call and a rallying cry for collective action. However, it's crucial to navigate the narrative with care, ensuring we don't inadvertently lay blame on the lifestyle choices of our younger generation but rather, see this as a reflection of broader societal shifts. Our engagement with the media, including platforms like the Daily Mail, is part of a larger strategy to amplify our message and mobilize support for actionable change. This includes our ongoing Change. org campaign, aimed at garnering the necessary attention and funding for myopia treatment through the NHS. In bringing this issue to the forefront, we hope to inspire a constructive dialogue that transcends mere awareness to foster real understanding and action. Myopia management is not just about correcting vision; it's about altering trajectories, enhancing quality of life, and, most importantly, preventing the onset of more severe conditions that can lead to vision impairment or loss. To everyone who has supported Myopia Focus — your engagement and support fuel our mission. The road ahead is long, but with each step, we move closer to a future where the implications of myopia are fully recognised, addressed, and, ideally, prevented. The goal is clear: to ensure that the next generation can look forward to a future not dimmed by preventable vision loss. Let's keep the conversation going. If you're passionate about making a difference in the fight against myopia, I invite you to join us in this crucial endeavor. Together, we can turn the tide on myopia and secure a brighter, clearer future for all. #MyopiaAwareness #ChildHealth #VisionCare #PublicHealth #ChangeMakers https://lnkd.in/dbpEdTAa

💥 Meet our NIA Twin Cities member, Dr. Michael Hennes. Mike is a functional neurologist at Neural Connections, and he has just joined our Virtual Connections group! 📌 Here's what he wants you to know about him... He has been in practice for 10 years, working with complex unresolved concussions and neurological symptoms. He also speaks and teaches about brain injury and improving neurological health for daily life. The Neural Connection is a specialized concussion, dizziness, and migraine rehabilitation clinic. They help people who are stuck even though they've done everything their doctors told them to do in order to find relief from their neurological symptoms. ✍ Dr. Mike wants to meet some of the following: ► Other healthcare providers that don't want to rehabilitate neurological problems ► Personal Injury attorneys ► Event coordinators who are responsible for finding event speakers ✍ A great referral for Mike would be individuals who are struggling with concussion, dizziness, or migraine and aren't getting the results they need from the care they've already had. Make sure to reach out to Mike today to get to know him and his services better. NIA remembers can use their Network In Action profile to make a connection and schedule a one-on-one.

1 person every 36 seconds. That’s how many people die in the U.S. from cardiovascular disease (CVD). Globally, 31% of deaths are associated with CVD. When Seth Bogner took a look at this problem, he saw way too many sick people—especially sick kids. Now, with his award-winning startup, HeartPoint Global Inc. , he’s leading a charge to improve heart health through technology. And decrease global health inequality as a byproduct. This week, we were lucky to speak with Seth for today's edition of our newsletter. At HeartPoint Global, he and his team provide global, breakthrough medical solutions for cutting-edge cardiac care that are affordable, safe, and minimally invasive. Heartpoint Global is the Cardiovascular Research Foundation (CRF) TCT 2023 Shark Tank (Innovation) Competition winner. In our interview, we discussed the global burden of heart disease, how telemedicine is combatting health inequality, and how he lead his business with the ethos of “loving thy neighbor.” Check out the interview below, and make sure to follow Seth Bogner here on LinkedIn. 👉 https://lnkd.in/eCnNu_2W

🌍💙 World Parkinson’s Day with MeCare: Uniting in Awareness and Hope 💙🌍 On World Parkinson’s Day, MeCare stands with the global community to elevate awareness about Parkinson’s disease and the impact it has on millions of individuals and their families worldwide. Today, we dedicate ourselves to shedding light on the challenges, advancements, and the resilient spirits of those living with Parkinson’s. Parkinson’s disease, a progressive neurological disorder, manifests through symptoms such as tremors, stiffness, and difficulty with balance and coordination. While the journey with Parkinson’s is unique for each person, the pursuit of research, treatment, and comprehensive care offers hope and pathways to manage its effects. At MeCare, our commitment is unwavering. We provide support, resources, and access to the latest in Parkinson’s care to those affected: - Empowering with Information: Offering up-to-date educational materials and resources to understand Parkinson’s and its management. - Connecting to Care: Facilitating connections with healthcare providers specialized in neurology and Parkinson’s care. - Building Community: Creating spaces for individuals and families to share experiences, support, and strength with others on a similar journey. This World Parkinson’s Day, we invite you to join us in spreading awareness and compassion. Whether by educating yourself about Parkinson’s, supporting research initiatives, or reaching out to those touched by the disease, your actions contribute to a world of difference. Together, let’s foster a future where every individual with Parkinson’s feels supported, understood, and hopeful. With ongoing research, advocacy, and community support, we stride closer to better treatments and ultimately, a cure. #WorldParkinsonsDay #MeCareSupport #ParkinsonsAwareness #HopeAndHealing

Reflecting on the past challenging months, navigating a "Rare Life Lived Better" has presented profound lessons. Amidst adversities, a pivotal choice emerges - acceptance or action. My sons, as extraordinary teachers, embody resilience, enduring 40 operations, undergoing enzyme replacement therapy, battling a brain hemorrhage, and confronting a myriad of other obstacles with unwavering courage. Their commitment to truth inspires me. Engaging in conversations with my sons revealed their astute observations on the global rare landscape: - Highlighting excessive self-interest among pharma, healthcare professionals, and patient organizations, alongside prevalent politics at various levels. - Emphasizing the critical need for genuine patient-centric listening. Many listen but don't hear. - Questioning the impact of systemic initiatives like the Rare Disease Framework and Innovative Medicines Fund on their lives. They congratulate one another for making progress when actually there is precious little. - Advocating for collaborative efforts among clinical centers, work together and not in isolation. Get rid of egos and don't think you know what is right for us, ask and then listen. Newborn Screening in the UK especially would be a joke if it wasn't costing lives. Government's don't care because we are a small population and our voice does not matter. - Shedding light on the selective support from pharmaceutical companies, urging for authentic partnerships, not just when they want something . Many have made a lot of money from Rare and Rare Patients and our journey. - Underscoring the unparalleled understanding of a Rare journey, a realm only comprehensible through lived experience. Their insights illuminate the existing intricacies and underscore the imperative for genuine empathy, collaboration, and patient-centric approaches in the rare disease domain. The journey of individuals with rare conditions demands holistic support and meaningful engagements, echoing the untold stories only comprehensible through lived experiences. I'm short- get real Many may not agree with all of the above and as the Group CEO of the MPS Society and Rare Disease Research Partners as well as LSD Global Chair I don't agree with it all but theirs is the most important opinion, A PATIENT'S. My sons do have a greater insight than many because of my work and it's great to have that frank opinion that maybe we all think about and reflect on what we can all do to make a "Rare Life Lived Better"# Ramblings of a CEO #MPSSociety#RDRP #Wematter

🌟 Welcome to Day 23 of FAST UK’s Advent Calendar! 🌟 Today, we’re proud to highlight a key achievement: A total of 141 people from the UK have registered in the Global Angelman Registry! 🌍📋 This participation is crucial. The registry is a vital tool for understanding Angelman Syndrome better, helping researchers and healthcare professionals develop more effective treatments and care strategies. Each registration represents a valuable contribution to the global effort to improve the lives of those living with AS. The registry includes a diverse age range, with 33% aged 3-8 years and 26% over 18 years. The data shows a near-even split between female and male registrants, reflecting the broad impact of Angelman Syndrome across genders and ages. Among these, 36% have a deletion diagnosis, 8% a mutation, 6% UPD/ICD and others fall into various categories (including unknown), providing valuable insights across genotypes. A huge thank you to every individual and family who took this important step. Your involvement is making a real difference in the advancement of AS research and care. Get started by clicking this registration link: https://lnkd.in/ekkafQxD #FASTUK #AngelmanSyndrome #GlobalRegistry #ResearchAdvancement

🌍 World MS Day 2024: Navigating MS Together Through Diagnosis and Solidarity 🎗️ Did you know that May 30th is World MS Day? 📅 It's a moment where the global community comes together to raise awareness about Multiple Sclerosis (MS) and show solidarity. But this year, it's all about "Diagnosis"! 🚦 MS is a complex disease that affects the central nervous system, causing symptoms like fatigue, cognitive changes, and muscular alterations. The impact goes beyond physical health, touching every aspect of life. That's why World MS Day 2024 focuses on "navigating MS together." We need to unite and understand the challenges faced by those with MS from the moment of diagnosis. 💪 The "My MS Diagnosis" campaign aims to shed light on the journey of diagnosis, which can be filled with uncertainty and anxiety. Early and accurate diagnosis is crucial for better care and support. 🏥 Let's navigate MS together and create a community that stands strong against MS! So, how can you get involved? 🌟 Share your stories, join fundraising events, and use hashtags like #MyMSDiagnosis and #WorldMSDay to spread the word on social media. Let's create a buzz that transcends borders and brings the global MS community closer than ever! 🌐💙 World MS Day is not just about raising awareness; it's also an opportunity to highlight advancements in research and treatment. From new therapies to adaptive technologies, we're making progress! 🌱 There's hope for better management and more independent lives for people with MS. Remember, behind every diagnosis is a person with dreams, challenges, and incredible strength. This year, let's embrace the theme of "My MS Diagnosis" and commit to navigating MS together. By amplifying voices and sharing knowledge, we move closer to a world free of MS. 🌈 Whether you're living with MS, a caregiver, a healthcare professional, or simply want to make a difference, join us on May 30th and throughout May for World MS Day. Share your story, connect with others, and take action. Together, we can navigate the challenges of MS and create a world where no one faces MS alone. 🤝💙 #WorldMSDay #MyMSDiagnosis #NavigatingMSTogether

April ignites the spark of “Parkinson's Awareness Month”, igniting a flame of understanding, support, and progress in the fight against Parkinson's disease. This month-long campaign is a beacon of hope, rallying individuals worldwide to stand together in solidarity with those affected by this complex neurological condition. Parkinson's disease, with its array of symptoms impacting movement and beyond, often remains misunderstood. But during this dedicated month, we strive to change that narrative, shedding light on the challenges faced by patients and their families. Empowerment lies at the heart of Parkinson's Awareness Month. Through education and support, individuals are equipped with the knowledge and tools to manage their condition and lead fulfilling lives. Transparent communication with healthcare providers, personalized care plans, and proactive wellness strategies empower patients to navigate their journey with confidence. Support networks and advocacy organizations stand as pillars of strength, providing invaluable resources and amplifying the voices of those impacted by Parkinson's. Together, we advocate for policy changes, increased research funding, and improved healthcare access, driving progress toward better care and support systems. Research remains our beacon of hope, guiding us toward breakthroughs in understanding, treatment, and ultimately, a cure for Parkinson's disease. As we join forces in raising awareness, fostering understanding, and advocating for change, we pave the way for a brighter future for Parkinson's patients and their loved ones. Let's unite in this shared mission, igniting hope and driving progress in the fight against Parkinson's disease. Together, we can make a difference and bring about positive change for all. #mentalhealth #parkinson’s #awareness #empowerment #inclusion #clinicalpsychologist #letsunlockmentalwellnesstogether

Meet Leah Bachar, founder and CEO of The Story of My Life, a revolutionary project in the field of post-trauma therapy. After a successful POC, Leah is in the final stages of discussions for a collaboration with a senior security entity and a leading medical institution. Leah's project focuses on the rehabilitation of post-trauma victims through the construction of a personalized program that reflects the patient's past and present, is trackable, and examines the effectiveness of the rehabilitation. This program allows therapists to receive vital information before the first meeting, leading to time savings and improved treatment. In an era where the world of therapy is in crisis, The Story of My Life offers an innovative solution: providing immediate responses to patients and full visibility to therapists about their patients' condition, a move that changes the face of post-trauma treatment. It's a true pride to accompany such a project and many other technological initiatives that are shaping a better future🙏

Shine YOUR light to illuminate what it’s like to live with hypersomnia! Share your experiences with idiopathic hypersomnia (IH) by taking the Illuminate Hypersomnia survey: https://bit.ly/IH-survey. Illuminate Hypersomnia brings together global members of the IH community – people living with and caring for someone with idiopathic hypersomnia. Join in today! The anonymous survey will take about 45 minutes to complete, depending on how much detail you share through multiple-choice and open-text responses. It has a “save and continue later” option if you need a break at any point. Learn more about the survey at https://lnkd.in/ei725qjN. #IlluminateIH #idiopathichypersomnia #livingwithIH #livingwithidiopathichypersomnia #idiopathichypersomnolence #PFDD #ELPFDD #patientfocused #sleepconsortium