SWM Partners Limited’s Post

Epilepsy is a serious and common brain disorder that can be life threatening. In fact, people with #epilepsy have a three times higher risk of early death than the general population. States have an important opportunity to advance awareness and education through legislation that can help prevent SUDEP (Sudden Unexpected Death in Epilepsy) and other epilepsy-associated deaths. All are invited to a webinar discussion hosted by Partners Against Epilepsy Mortality (PAME) Against Mortality in Epilepsy and moderated by Tom Stanton from #DannyDid to learn about state level policies that have been prioritized by a range of epilepsy stakeholders. We'll also feature PAME's new Advocacy Toolkit that seeks to empower advocates across the country who are interested in protecting people living with epilepsy. Free registration is at https://lnkd.in/gP5B5hEJ The panel will include experts in government affairs and in epilepsy research, and a person who lost her brother to epilepsy and is now championing positive change in her home state. This webinar is generously sponsored by UCB. #NEAM #NEAM2024 #epilepsyeducation #SUDEP #SUDEPawareness Anne Gramiak Gardiner Lapham Laura Lubbers Katie Collins Hannah Whitten Mary Duffy Lara Falcon Matthew Simonian

Today we remember the Editor's choice from 2020: We All Have a Role to Play: Redressing Inequities for Children Living with CAH and Other Chronic Health Conditions of Childhood in Resource-Poor Settings https://lnkd.in/gvbRQ5g CLAN (Caring and Living as Neighbours) is an Australian-based non-governmental organisation (NGO) committed to equity for children living with chronic health conditions in resource-poor settings. Armstrong et al. uses the Knowledge to Action (KTA) framework to analyse CLAN’s activities for children living with CAH in the Asia Pacific.

At Stanford University School of Medicine inaugural Congo Week, Wellness Equity Alliance was well represented, as our very own Wendy Bernstein and Tyler B. Evans, MD, MS, MPH, AAHIVS, DTMH, FIDSA highlighted the critical need for mental health resources and healthcare infrastructure in the Democratic Republic of Congo (DRC). From sexual and gender-based violence (SGBV) to infectious diseases to community violence as a public health issue, they stressed the importance of community collaboration and systemic solutions. With so much to be done, we remain hopeful that resilience, paired with education, can empower local providers to transform healthcare in DRC. For more, read the full article from The Stanford Daily at https://lnkd.in/dE5Pekrc #GlobalHealth #MentalHealth #Congo #HealthcareTransformation

Hip Dysplasia affects 1 in every 100 babies in Australia and can lead to disability, pain or the need for a hip replacement. This Hip Health Day, we put the spotlight on the Victorian Hip Dysplasia Registry, also known as VicHip. VicHip is a clinical registry, led by Murdoch Children's Research Institute (MCRI), that collects information from children diagnosed with hip dysplasia across four major campuses - Barwon Health, Western Health, Monash Health and The Royal Children's Hospital. VicHip Research Lead Associate Professor Leo Donnan details how linking this clinical information to GenV data, a study tracking the health of an entire generation, will help transform the diagnosis and care of hip dysplasia. "Our dataset, linked with the GenV project, becomes much richer and we can explore things that no other registry can," he said. "Along the way we will be publishing and producing information to change practice, we'll be implementing this as we go - we can link in with other doctors, other centres and other researchers who are doing things in the same field...to answer the big questions at the end." Watch the full video 📹 ⬇ and learn more about VicHip ➡ https://lnkd.in/gbWg54Tx #MCRI #MCRIresearch #ChildHealth #HipDysplasia #HipHealth #VicHip

A new baby is the most precious thing and so vulnerable too. December 1st-7th was Infantile Spasms Awareness Week. TSC Alliance strives to provide awareness and education on IS - a medical emergency. But any time of year is a time to watch your baby's cue's carefully. Infantile Spasms are a rare but very serious type of seizure - occurring in 1 in 2,000 children - that causes catastrophic permanent damage to a child’s developing brain. While they can begin anytime the first two years, the onset often peaks between four and six months. Seizures - caused by a condition in the baby’s brain - can be hard to spot. They include repetitive but often subtle movements like jerking the mid-section, raising the arms, or wide-eyed blinks. “Red flag” symptoms include small crunches, head drops, head bobs, or uncontrolled movements. Infantile spasms are often overlooked or misdiagnosed as colic, reflux, or a startle reflex. If you suspect your child may be showing symptoms of Infantile Spasms, inform your doctor immediately. Leaving infantile spasms undetected and untreated can lead to devastating life-long effects on developmental progress, loss of skills causing significant cognitive disabilities, or brain damage. Healthcare providers are on the front line for combatting this condition. PCPs control the speed in which infantile spasms are detected—a key factor in how effectively they can be treated. Neurologists must begin treatment within the first 7 days of an IS diagnosis to have the best chance of preventing long-lasting symptoms. Follow the mnemonic tool ‘STOP’: See the signs: Clusters of sudden, repeated, uncontrolled movements like head bobs or body crunching. Take a video: Talk to your doctor immediately. Obtain diagnosis: Confirm an irregular brain wave pattern with an EEG test. Prioritize treatment: End spasms to minimize developmental delays. Click link in bio to learn more about ISAW and join the conversation with #ISAW2023 #InfantileSpasms #InfantileSpasmsAwareness #InfantileSpasmsAwarenessWeek #IS #ISAW #December #Moms #MomsHelpingMoms #Baby #Babies #HealthAdvocate #Seizure #Seizures #SeizureSupport #Epilepsy #Neurology #Convulsions #seizureawareness https://lnkd.in/eFhRxaqA

📢 New paper from my dissertation is now out in Health Policy (under Elsevier)! The piece, entitled “Exploring assisted dying policies for mature minors: A cross jurisdiction comparison of the Netherlands, Belgium & Canada”, was written with my amazing team of co-authors, Alexandra Cernat, PhD MSc, Avram Denburg, Fiona Jasmine Moola, Jeremy Petch, PhD, and Jennifer Gibson. In this piece we offer the first substantial comparative policy analysis on assisted dying legislations from two jurisdictions that include mature minors (i.e., The Netherlands and Belgium) and from Canada (where all minors are ineligible from being able to access MAID). This analysis contributes to our understanding of the ways in which context and sociopolitical values shape assisted dying legislations and the treatment of mature minors therein, while highlighting areas requiring further study amid ongoing debate in Canada. I’m really proud of this work and invite everyone to read through our work and share reflections, questions and comments to move the needle forward on dialogue related to assisted dying for mature minors. https://lnkd.in/eMdiwbBT

MOMS! After your daughter gets her "11 year-old shots" don't start taking her to the little clinic for her sports/camp physicals -- that is a crucial time to miss early-onset scoliosis. Keep seeing your pediatrician for thorough annual checkups. The in-school scoliosis screenings aren't until 7th or 8th grade, when most girls have already started periods -- my daughter had already been braced for 2 years and had surgery by that time. Starting periods is a sign growth plates are closing and early-onset scoliosis correction methods become less effective. Had we learned about early-onset VBT scoliosis correction surgery 6 months earlier, that would have given her 10-15 more degrees of correction and 1-2" more in height.

New FutureNeuro research highlights lamotrigine as a potentially better first-line treatment than levetiracetam for women of childbearing age with juvenile absence epilepsy (JAE). The study underscores the importance of personalised treatment plans and demonstrates the value of using Bayesian methods to improve clinical decision-making. This is a step forward in addressing treatment challenges and providing safer, more effective care for women with JAE. Find out more: https://lnkd.in/eBqbAwrF #EpilepsyResearch #JAE #PersonalisedMedicine #ClinicalResearch Science Foundation Ireland Epilepsy Ireland

3 Take Aways of Prof. Berthold Koletzko’s powerful remarks at the "Call to action Priorities and statements in support of the new WHO/UNICEF European Child and Adolescents Health and Wellbeing Strategy" 1) Investing in childhood markedly benefits societies as a whole and has a huge return on investment. Strong scientific evidence shows that investing in health, especially during the first 1,000 days from preconception to early childhood, has lifelong benefits. It significantly reduces the risk of non-communicable diseases like obesity, diabetes, heart disease, and some cancers while boosting productivity. We must capitalise on this evidence. 2) To do better, we need to invest in well-trained professionals. Across Europe, there is an increasing shortage of paediatricians, child psychiatrists, psychotherapists, paediatric nurses, and other specialists trained to care for children. We must do more to attract young people to these fulfilling careers and provide working conditions that keep them engaged rather than leaving in frustration. 3) We have a lot to do, but we can do it. Together. The European Academy of Paediatrics (EAP) is ready to collaborate and fully support the WHO child and adolescent health agenda. By working closely with WHO and its member states, we can ensure that the necessary steps are implemented effectively over the coming years. Together, we can create a healthier future for our children. #PrioritizeChildAndAdolescentHealth #InvestInHealthcare #WHO WHO Regional Office for Europe UNICEF

*** New research published today with Professor Amy Brown. *** This was a prospective study, funded by Higher Education Funding Council for Wales (HEFCW) - Cyngor Cyllido Addysg Uwch Cymru (CCAUC) and UK Research and Innovation, which asked caregivers to complete questionnaires about their mental wellbeing at the point of contacting the Hearts Milk Bank and again after support was completed. We found both depression and anxiety levels dropped to normal levels in almost every case (over 80 families were included) over the course of the intervention. This finding provides further evidence that accessing much needed lactation support and donor milk in the perinatal period can help parental wellbeing, and potentially protect against postnatal depression. The Human Milk Foundation has now supported over 650 families with access to donor milk and lactation support. What will the next 650 teach us? You can read the full paper #openaccess here: https://lnkd.in/e7VcJFYn Medical Research Council Cambridge Social Ventures MassChallenge UK