The International Alliance of ALS/MND Associations’ Post

As well as investigating the effects of psilocybin therapy for individuals with palliative care needs using a randomised controlled trial, we will also be conducting qualitative research into the individuals' experiences of the therapy as part of work package 3. Members of our project team have previously conducted similar research, which you can access here: https://lnkd.in/eub2FYtX This descriptive article gives a clear overview of the different concerns that individuals may have before engaging with psilocybin therapy, as well as raising valuable questions for future research in this field. #psilocybintherapy #psychedelicresearch #EUfundedresearch

“This randomized clinical trial found that psilocybin therapy resulted in a significant, sustained reduction in symptoms of depression experienced by clinicians after frontline work during the COVID-19 pandemic. The findings establish psilocybin therapy as a new paradigm of treatment for this postpandemic condition.” https://lnkd.in/eWpC8SAZ

Migrevention team is proud 🎉 Congratulations, Triinu Niiberg-Pikksööt, Mark Braschinsky, and other authors of recent PLOS Digital Health #publication 👏 #Migraine is one of the most frequent and expensive neurological disease in the world. Nonpharmacological and digitally administered treatment options have long been used in the treatment of chronic pain and mental illness. Digital solutions increase the patients’ possibilities of receiving evidence-based treatment even when conventional treatment options are limited. Now the research protocol for digitally derived migraine treatment has been published. This is the first publication in series of more to come. Read more: https://lnkd.in/dmdpNKCY #brainawarenessweek #headachematters

🌍 𝐈𝐧𝐭𝐞𝐫𝐧𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐀𝐭𝐚𝐱𝐢𝐚 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐃𝐚𝐲 𝟐𝟎𝟐𝟒: 𝐑𝐚𝐢𝐬𝐢𝐧𝐠 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐟𝐨𝐫 𝐚 𝐑𝐚𝐫𝐞 𝐍𝐞𝐮𝐫𝐨𝐥𝐨𝐠𝐢𝐜𝐚𝐥 𝐃𝐢𝐬𝐨𝐫𝐝𝐞𝐫 🧠  𝐖𝐡𝐞𝐧 𝐢𝐬 𝐈𝐧𝐭𝐞𝐫𝐧𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐀𝐭𝐚𝐱𝐢𝐚 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐃𝐚𝐲? International Ataxia Awareness Day is observed globally on September 25th, to raise awareness about ataxia, a rare neurological disorder that affects coordination, balance, and speech. This day is dedicated to educating the public about the condition and supporting those living with it. 𝐖𝐡𝐲 𝐃𝐨 𝐖𝐞 𝐂𝐞𝐥𝐞𝐛𝐫𝐚𝐭𝐞 𝐈𝐧𝐭𝐞𝐫𝐧𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐀𝐭𝐚𝐱𝐢𝐚 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐃𝐚𝐲? Ataxia is often misunderstood and misdiagnosed, and those affected face unique challenges. This day aims to: 𝐈𝐧𝐜𝐫𝐞𝐚𝐬𝐞 𝐚𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐚𝐛𝐨𝐮𝐭 𝐚𝐭𝐚𝐱𝐢𝐚’𝐬 𝐢𝐦𝐩𝐚𝐜𝐭 on daily life and its various forms, including both hereditary and sporadic ataxias. 𝐏𝐫𝐨𝐦𝐨𝐭𝐞 𝐞𝐚𝐫𝐥𝐲 𝐝𝐢𝐚𝐠𝐧𝐨𝐬𝐢𝐬 𝐚𝐧𝐝 𝐭𝐫𝐞𝐚𝐭𝐦𝐞𝐧𝐭 options that can improve quality of life for individuals with ataxia. 𝐒𝐮𝐩𝐩𝐨𝐫𝐭 𝐫𝐞𝐬𝐞𝐚𝐫𝐜𝐡 𝐞𝐟𝐟𝐨𝐫𝐭𝐬 𝐚𝐢𝐦𝐞𝐝 at finding better treatments and, ultimately, a cure. 𝐅𝐨𝐬𝐭𝐞𝐫 𝐜𝐨𝐦𝐦𝐮𝐧𝐢𝐭𝐲 𝐛𝐲 𝐜𝐨𝐧𝐧𝐞𝐜𝐭𝐢𝐧𝐠 𝐩𝐚𝐭𝐢𝐞𝐧𝐭s, caregivers, researchers, and healthcare providers to share knowledge and offer support. 𝐇𝐨𝐰 𝐂𝐚𝐧 𝐘𝐨𝐮 𝐆𝐞𝐭 𝐈𝐧𝐯𝐨𝐥𝐯𝐞𝐝 𝐢𝐧 𝐈𝐧𝐭𝐞𝐫𝐧𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐀𝐭𝐚𝐱𝐢𝐚 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐃𝐚𝐲? There are several ways to raise awareness and show support: 𝐄𝐝𝐮𝐜𝐚𝐭𝐞 𝐘𝐨𝐮𝐫𝐬𝐞𝐥𝐟 𝐚𝐧𝐝 𝐎𝐭𝐡𝐞𝐫𝐬: Learn more about ataxia and share information on social media to spread awareness. 𝐒𝐮𝐩𝐩𝐨𝐫𝐭 𝐑𝐞𝐬𝐞𝐚𝐫𝐜𝐡: Contribute to organizations that fund research into the causes, treatments, and potential cures for ataxia. 𝐏𝐚𝐫𝐭𝐢𝐜𝐢𝐩𝐚𝐭𝐞 𝐢𝐧 𝐀𝐰𝐚𝐫𝐞𝐧𝐞𝐬𝐬 𝐄𝐯𝐞𝐧𝐭𝐬: Attend virtual or in-person events that highlight the experiences of those living with ataxia, and engage in community support efforts. 𝐁𝐞 𝐚𝐧 𝐀𝐝𝐯𝐨𝐜𝐚𝐭𝐞: Help raise awareness about the challenges faced by those with ataxia by advocating for better healthcare access and support services. On International Ataxia Awareness Day 2024, let’s stand together to support individuals living with this disorder and push for greater awareness, understanding, and advancements in research. 💙 #InternationalAtaxiaAwarenessDay #AtaxiaAwareness #NeurologicalDisorders #SupportResearch #PatientAdvocacy #HealthcareForAll

I am thrilled to announce that I have been invited to join the Rare Disorders NZ (RDNZ) Clinical Advisory Panel. Rare Disorders has recently unveiled its inaugural health strategy, with a key focus on increased genetic testing. This strategic approach is crucial as, in many instances, genetic testing stands as the sole method to pinpoint the underlying cause of rare disorders. These conditions often go undiagnosed or are misdiagnosed, given their rarity, leaving patients and healthcare providers grappling with unfamiliar territory. The largest commonality among rare disorders is hearing impairment. By extending whole genome testing to children identified with hearing loss, the likelihood of detecting rare disorders at birth significantly improves outcomes as well as saving hundreds of hours of time and thousands of dollars in medical bills. In New Zealand, this would mot exceed a 140 babies a year. Joining forces with the RDNZ Clinical Advisory Panel presents a valuable opportunity to contribute to the advancement of healthcare practices and support individuals affected by rare disorders. Together, we can strive towards improved identification, understanding, and management of these complex conditions for the benefit of patients and their families. Rare Disorders New Zealand has recently launched a crucial petition. We are calling on Te Whatu Ora to urgently develop and implement a practical plan for the Rare Disorders Strategy. Join me in supporting RDNZ. https://lnkd.in/gKrtgzCH #RareDisorders #GeneticTesting #HealthcareStrategy

Breaking News! 😃 My latest research on the comparative effectiveness of beta-blockers and SSRIs in treating panic disorders is now published. We conducted a cohort study to investigate the effectiveness of combination versus SSRI monotherapy. Key Findings: 1. Despite our extensive analysis, we found no significant difference between the two treatment plans in improving symptom severity. Our study contribute to the knowledge gap of the potential benefits and limitations of each approach, giving clinicians important considerations for patient care. #panicdisorder #mentalhealth #SSRI #betablockers #research #publication #clinicalpractice #healthcare

As you know, neurological disorders are the leading cause of disability and mortality globally and access to essential medicines for these disorders remains a critical global health challenge. On 23 July (14:00 CEST), World Health Organization will host a webinar to launch a report on Improving access to medicines for neurological disorders, comprehensively describing the status of access to these essential medicines globally. Using epilepsy and Parkinson disease as tracer conditions, the report highlights the wide unavailability and unaffordability of these medicines, explores the different health system barriers affecting access, and showcases special scenarios where some of the challenges can be exacerbated. The report offers a framework for multi-level, multi-sectoral actions to address the challenges identified, and serves as a call to action for all stakeholders to commit to tangible, sustainable improvements in the accessibility of medicines for neurological disorders. The WHO Brain Health Unit kindly invite you to join the virtual launch and support the dissemination of the findings of this important report. Please use the following link to register and feel free to share it within your networks: https://lnkd.in/e4fhazZ7

New research shows that ketamine therapy is just as effective as electroconvulsive therapy (ECT) for treating treatment-resistant depression—but without the severe side effects like memory loss. 💡 In a study, 55% of patients who received ketamine reported a 50% or greater improvement in their symptoms. 🌟 At Renue Wellness, we're proud to offer cutting-edge treatments that deliver results without the drawbacks of more traditional methods. 🙌 Learn more at renuewellness.com #KetamineTherapy #MentalHealthInnovation #DepressionRelief #CuttingEdgeCare #MentalWellness

New research shows that ketamine therapy is just as effective as electroconvulsive therapy (ECT) for treating treatment-resistant depression—but without the severe side effects like memory loss. 💡 In a study, 55% of patients who received ketamine reported a 50% or greater improvement in their symptoms. 🌟 At Renue Wellness, we're proud to offer cutting-edge treatments that deliver results without the drawbacks of more traditional methods. 🙌 Learn more at renuewellness.com #KetamineTherapy #MentalHealthInnovation #DepressionRelief #CuttingEdgeCare #MentalWellness

Recently, an insightful report was published by the #EconomistImpact, supported by Roche, on the value of action in mitigating the impact of neurological disorders in the United Kingdom. This comprehensive study 📑 reveals that neurological conditions affect one in six people in 🇬🇧, with a significant economic burden of over 4.3% of GDP 💷 The good news is that existing interventions - preventative, therapeutic, or rehabilitative - can reduce the human and economic expenses by about 1/3. The innovative therapies for #SMA (spinal muscular atrophy) when combined with physiotherapy and respiratory support, have shown evidence of improved motor function and respiratory status. The study shown that treatments caused a reduction in overall health service demands for treated patients, as well as a significant drop in caregiver burden. The economy-wide benefits from access to treatment can results in an 11% reduction in the baseline costs. Check the full report for more insights https://rb.gy/qxu84n. Change is necessary, so let’s work together to improve outcomes for those affected by neurological disorders 🌏 #NeurologicalDisorders #Healthcare #Research