LuMind IDSC Foundation’s Post

Good Morning! Just some news to share with you as early FYI. I’ll have a registration link etc in a few weeks - please share & save the date! 2024 Palliative Medicine Symposium: State of the Science  Date: October 18, 2024 Time: 730 am - 5pm Location: The Penn Stater Hotel & Conference Center State College, PA Format: Hybrid - we are offering both in person and virtual (Zoom) attendance options. Cost: $125 in person/$75 virtual AGENDA: 1. Keynote Lecture: Palliative Wound Care: When Healing is Not an Option.  2. Empowering Life: Advanced COPD Management with Palliative Care Collaboration 3. Choice or Challenge: Unraveling the Ethics of Voluntary Stopping of Eating and Drinking (VSED)  4. Soul Searching in Serious Illness: Navigating Spiritual and Existential Distress 5. Cultivating Community: Normalizing Conversations About Dying, Death, and Grief 6. Staying Ahead: Essential Cancer Updates for Primary Care Providers 7. Sharp as a Tack: Discerning Decisional Capacity from Competency 7.75 CME HOURS

This lecture looks brilliant! Advance planning and informed, supported decision-making are essential in any long term neurological condition. With MND the timescale and impact of the condition mean these discussions need to happen regularly, as part of a journey, and with space to revisit and change decisions. It sounds like this lecture will address all this and more - perhaps we'll see you there? #ACP #palliativecare #neuropalliative #MND

We're on a mission to improve the future of Turner syndrome care, but we need the participation of all Turner syndrome patients and caregivers! 🔬 Researchers around the world are working to understand Turner syndrome better so the medical community can improve support for patients throughout the lifespan. To do these clinical studies, having access to patient data is key, and that's why we launched TSRX: the Turner Syndrome Research eXchange. It's a survey that patients and caregivers of minors can fill out, sharing essential data with global researchers securely and confidentially. Our goal is to get to 300 signups. We know it's a big goal, but we believe that as a community we are capable of reaching it. 💪  ➡️ Join at www.TSRX.us #TurnerSyndromeFoundation #TurnerSyndrome #ClinicalResearch

Recently returned from the 2024 Critical Care Congress in Phoenix, Arizona. It was an excellent time to acquire knowledge, make connections, experience humility, and find inspiration. I also took the opportunity to present our research findings, wherein we developed and internally validated the first prediction model for stages of acute kidney injury in critically ill patients. The full paper is expected to be published in the coming months. Meanwhile, you can review our research abstract here: https://lnkd.in/gD3PUhSv. #SCCM2024 #UMCG #CPE

Here's a thought experiment - What defines an MS expert? One response is that it's an individual with many years of research and clinical expertise. Indeed this is one way to consider MS expertise. There is another way to look at MS expertise - through the lived experience of people with MS. Viewing expertise through this lens means that there are nearly 3 million MS experts worldwide. People with MS must be engaged to bring their unique perspectives and expertise to inform our drive to cure MS. During last year's ECTRIMS MSMilan 2023 Congress we saw a great example of what this engagement can look like. The ECTRIMS Patient Community Day brought together people with MS, NMOSD, and other demyelinating diseases, researchers, and patient organization leaders for conversations about progress, challenges, and opportunities for impact. In this ECTRIMS podcast, National MS Society leadership volunteer Bonnie L. Higgins and I joined Brett Drummond on the ECTRIMS podcast for a conversation about the ECTRIMS Patient Community Day. We shared our thoughts as a person living with MS (Bonnie) and a patient organization leader (Tim) on the importance of creating these opportunities for collaboration between patients, researchers, and organizations. Thanks to ECTRIMS and Brett Drummond for inviting us to share our thoughts on this important initiative. Together we are stronger. #ms #multiplesclerosis

🌍 Calling all healthcare professionals! Enhance your expertise in caring for EDS and HSD patients with the EDS ECHO Multidisciplinary Team Practice: Europe Program. ⁠ ⁠ 🌟 Led by experts Assoc. Prof. Dr. Alan Hakim and Prof. Jane Simmonds, this program offers comprehensive modules on diagnosis, treatment, and collaboration across disciplines. Improve patient outcomes through evidence-based practices and connect with peers worldwide. The next program begins September 17 looking at Neuro-musculoskeletal Concerns. Program topics will include: ● Complications of the Cervical and Thoracic Spine ● Craniocervical Instability ● TMJ and Dental Concerns ● Speech and Swallow Disorders ● Shoulder Instability ● Wrist and Hand Dysfunction ⁠ CME/CEU/CE credits are available to healthcare professionals. Credits are awarded at 1 per 60 minutes of live session activity.⁠ ⁠ 📅 Learn more and register: https://lnkd.in/gGVCCYvs ⁠ Through these programs, the Ehlers-Danlos Society aims to foster collaboration and improve the care and quality of life for those with EDS and HSD.

MAA President John A. Johnson MD, MBA, FACP pictured with Emory University President Gregory L. Fenves and Medical Association of Georgia President and MAA Board Member Dr. Charles Wilmer at the First Annual Symposium to Address the Maternal Health Crisis in Georgia. Dr. Johnson outlined maternal health as a key topic of focus for the MAA, particularly surrounding access to care: "We must collaborate with our legislators as clinical subject matter experts and health systems to address health disparities in Georgia not from a political or partisan perspective but from a social, moral, and ethical perspective. We must do what is in the best interest of Georgia citizens and our patients. The role of MAA and other organizations should primarily be to focus on matters that impact equitable access to patient care, protecting the rights of patients, scope of practice for physicians, and focusing on health outcomes for Georgians, all Georgians." We will feature more feedback and next steps from the event here soon. Learn more about the event and find resources here: https://lnkd.in/gD5eC6Fk

The first step to better health care and access for people across our state is collaboration with like-minded organizations that can help us deliver better value and improved access. That’s why it’s so meaningful that UNC Health and Blue Cross NC shared today that we’ve reached a long-term agreement to continue our long-standing work together.   What does this mean for North Carolinians?   1. Rural areas benefit from this collaboration. All Blue Cross NC members will have access to UNC Health, no matter where they live in the state, and the four-year agreement will enable further collaboration on new ways to improve care and access for patients across North Carolina, especially in rural areas. 2. Strong collaboration matters for our state. Together, our organizations have joined forces including conducting a clinical study to improve food security and chronic conditions and creating a physician’s assistant master’s degree for veteran medics at the UNC School of Medicine..     3. Stability provides peace of mind. UNC Health and Blue Cross NC have worked together for many years. We are both born in North Carolina, created to serve our state.   I'm excited that this news reflects our shared commitment and ongoing collaborative spirit.   https://lnkd.in/d5GqHRi5

🎉 Today, the U.S. House of Representatives overwhelmingly passed the first-ever Parkinson's specific legislation with an awe-inspiring vote of 407-9*! It's a testament to the dedication of countless advocates, researchers, patients, and supporters who've relentlessly championed this cause. It will head to the Senate in early 2024. ✅ This legislation is an incredible milestone in the fight against Parkinson's disease and atypical parkinsonisms such as dementia with Lewy bodies (DLB), multiple system atrophy (MSA), progressive supranuclear palsy (PSP), and corticobasal degeneration (CBD). The bill aims to allocate substantial resources to advance scientific understanding, accelerate innovative treatments, and improve access to comprehensive care for Parkinson's patients nationwide. Moreover, it underscores a commitment to fostering a collaborative framework between governmental agencies, researchers, healthcare providers, and the community. Big 👏 and 🙏🏼 to The Michael J. Fox Foundation for Parkinson's Research, who have led the way with the support of organizations such as The Multiple System Atrophy Coalition, CurePSP, and dozens of others. *I wanted to see who the 9 nays were, check link in comments. #parkinsonsawareness #multiplesystematrophy #parkinsonsresearch

Excited and grateful for this new bill - The National plan to End Parkinson’s Act. From the Parkinson’s Foundation: Top 5 ways this monumental bill can make an impact: 1. Dramatically increase federal research funding. 2. Develop more effective pathways for treatments and cures. 3. Improve early diagnosis. 4. Spark new and improved models for patient care. 5. Address health disparities in diagnosis, treatment and clinical trial participation.