Jim Brown’s Post

🌟 June is ALS Awareness Month 🌟 Every June, we come together to shine a light on Amyotrophic Lateral Sclerosis (ALS), a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. This month is dedicated to increasing public awareness about the disease, supporting families affected by ALS, and rallying for funding for research towards a cure. 🔹 What is ALS? ALS, often referred to as Lou Gehrig's Disease, leads to the gradual degeneration and death of motor neurons. As these motor neurons die, the brain loses the ability to initiate and control muscle movement, leading to paralysis in the final stages of the disease. 🔹 Why Awareness Matters? Raising awareness about ALS is crucial as it brings attention to the needs of the community, mobilizes support, and increases funding for research that is desperately needed to discover new treatments and a cure. Join us in supporting those affected by ALS and in the pursuit of a cure. 💙 #ALSAwarenessMonth #EndALS #ALSAwareness #June1to30 #FightALS #CureALS #lendinghand #healthcare #homecare #lhcare #londonontario #519london

Did you know that June is ALS Awareness Month? 🌟 It's a time to raise awareness about Amyotrophic Lateral Sclerosis (ALS) and show our support for seniors living with this progressive neurological disease. 🧡 Our latest blog post dives deep into ALS, its impact on seniors, and how you can provide the care and support they need. 💪 From understanding the disease to offering physical and emotional assistance, we've got you covered. 🤝 Join us in creating a compassionate environment for seniors with ALS! Let's learn, advocate, and make a positive impact together. Check out our blog post now and download your free copy of our support guide for caregivers of individuals with ALS: https://bit.ly/3UsTJOE Together, we can improve the quality of care and make a difference in the lives of those affected by ALS.🌻 #Ottawaseniorcare #Mississaugaseniorcare #dementiacare #alsawarenessmonth #caregivers

Read our newest publication on Alzheimer’s Disease and Related Dementias (AD/ADRD)! With millions of Americans living with neurodegenerative disorders, speakers at our January workshop explored promising areas of research that could improve the prevention and treatment of AD/ADRD. Learn more and read here: https://ow.ly/L7xA50RsGUN #Alzheimers #ADRD #Dementia #AlzResearch

Save The Date: 10.15.2024 Are you or someone you know caring for-or living with Lewy Body Dementia? If yes or are just interested in learning more about this form of dementia, consider attending a once in a lifetime virtual public event! #caregivers #familycaregivers #dementia #virtualevent #caremanagers #neurology

Neurological diseases are often complex, and life, including decision-making, can be hard to navigate in the face of uncertainty about how the future may unfold. Join the Courageous Parents Network for a virtual discussion on how parents of children with neurological conditions can feel empowered to impact the things under their control, mitigate risk, and feel grounded in their family values. Register here: https://ow.ly/7LTG50TOQBE

🌍💙 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

83% of patients look to social media to diagnose their symptoms… and 50% of the time their social media diagnosis is correct. In a world where the wait time for a specialist is far too long, and with conditions such as endometriosis you might see 10 doctors before you get the right diagnosis, this doesn’t come as a surprise. During my own diagnosis, I had already seen 6 providers and had 3 procedures - and experienced what I now know to be 4 misdiagnoses- before I turned to social media for help. I knew something was wrong with my body. I knew my symptoms were not normal. I needed validation and community. I was begging for someone who had “been there before” to help me navigate things. What I found on social media was a community of patients just like me advocating and sharing their experiences. They gave me the strength to scream louder and finally, to be heard. What I did not find on social media was the community I needed. I remember meeting someone “in real life” with endometriosis and feeling so excited to put a face and a name to it. She was like me! When I joined Pelvic Rehabilitation Medicine we knew our patients, and all the patients like ours, needed that same community. It’s why Worthy Warrior was dreamt up. It’s why on July 10, we launched worthywarrior.com It was created by patients, for patients. The vision is simple: A world where we normalize the experiences of Endo Warriors to end the stigma and pave the way for access to care and a life without pain for all endo and pelvic pain sufferers. Building this platform, this community forum, with my team and with the team at Cardinal Digital Marketing was nothing short of a labor of love and launching to over 500 early access users was and still is a dream- more people who want this! I hope everyone checks it out and joins if they haven’t. There is so much more work to do, and it starts with ending the stigma and raising our voices louder.

With funding from Crohn’s and Colitis UK, we have developed a new digital support programme for young people living with IBD, called ASSIST-IBD. The programme has been designed with young people with IBD to help others follow their treatment plan. The programme contains activities and podcasts tackling tricky topics such as taking medication; talking to healthcare professionals; following lifestyle advice and telling others about your IBD We are now looking for young people to try out ASSIST-IBD for 6-12 weeks and tell us what it is like to use. We are also interested in parents/guardians’ views of our parent resources. To explain this project in more detail we are hosting an information evening on Thursday 12th September 2024 at 6-7pm. During the event you will be able to ask the research team questions about the project. This event is free to attend and open to young people (aged 13-17) who have been diagnosed with IBD and live in the UK as well as parents/guardians of young people (aged 13-17) who have been diagnosed with IBD and live in the UK To register for the event click here https://lnkd.in/esy2kZ_H ASSIST-IBD, co-designed by young people with IBD, for young people with IBD! #crohnsandcolitisuk #crohns #colitis #inflammatoryboweldisease #ibd #WorldIBDDay #research #IBDtreatment #lovetheskinyourein #crohnsdisease #crohnsurvivor #chronicillness #invisibleillness #IBDawareness #ibdwarrior #crohnswarrior #notalldisabilitiesarevisible #crohnsawareness #crohnsandcolitis #guthealthforlife #autoimmune #autoimmunedisease #awareness #advice #help #honesty #allinforcrohnsandcolitis #ibdscotland #crohnsscotland #colitisscotland

At this year’s 2024 Palliative Care Summit, our very own Janet Wagland joined a powerful panel discussion on the realities of caring for someone with a neurodegenerative condition. Janet shared valuable insights on how we can support families without taking over their role: “It’s important we engage with families, empower them, and learn from them about their loved one.” The summit focused on how we can have those honest, sometimes tough conversations about life, death and everything in between. It’s about looking at the whole care journey, not just the disease. #PalliativeCare #BrightwaterCare #EndOfLifeCare #NeurodegenerativeDiseases

Why do we actively advocate for sickle cell disorder, in and out season? There are many things about sickle cell disorder that the healthcare community and the public are unaware of, This vacuum allows misconceptions, misinformation, and myths about sickle cell disorder to thrive. So, our advocacy requires us (sickle cell warriors, caregivers, and the community) to use our experiences and works in sickle cell disorder, To inform and inspire the healthcare community and the world, To eradicate the misconceptions, misinformation, and myths about it, To improve the knowledge, care, support, and resources allocated to it, To encourage more research and studies into it. This fight is not just about us only, It is also about the next generation, So that others will not suffer the things we suffer. May we enjoy a healthy, successful, and prosperous 2025. Happy New Year. © Diary of a Sickle Cell Warrior and Advocate.