Children's Craniofacial Association’s Post

#PARTNERSUNDAY The CARE Study Team has their Spring Newsletter out! Please take a look! https://lnkd.in/gq6vMJYh More info on the study: https://lnkd.in/g9HRWfhi The CARE Study team serves the craniofacial microsomia (CFM) community, which includes individuals born with CFM and their families, healthcare teams, researchers, advocacy groups, education systems, policy makers, and members of the public. We seek to learn about the lived experiences of the CFM community to improve wellbeing and to make a lasting difference to the CFM journey both now and in the future. We consider CFM to be a broad term that includes the following diagnoses: microtia, hemifacial microsomia, Goldenhar syndrome, and Oculo-Auriculo-Vertebral Spectrum (OAVS).

Spatial neglect is a common complication that often escapes detection with serious consequences for stroke survivors. Scientists in our Center for Stroke Rehabilitation Research have developed game-changing clinical tools for detecting, assessing, and treating spatial neglect. Learn more: https://lnkd.in/ew_rXeaZ Guide to Spatial Neglect for Family Stroke Survivors and Family Caregivers: https://lnkd.in/efV9TGky Guide to Spatial Neglect for Healthcare Professionals: https://lnkd.in/e_2vkUGC

📇 Just published! https://lnkd.in/gkBJrAyW So excited to share our qualitative study investigating the acceptability of modified constraint-induced movement therapy among stroke survivors and carers in an early-supported discharge rehab service. A team effort with Barbara Singer, Erin Godecke and our lived experience partners. We interviewed 15 stroke survivors and 10 carers to learn about their experiences of participating (or supporting) a mCIMT program. What did they think? - stroke survivors felt that mCIMT programs provided structure to their day while navigating the changes associated with transitioning home after stroke - they saw benefits for mCIMT in improving upper limb function compared to other interventions - while challenging, mCIMT was achievable and improvements in arm use spurred further motivation - all stroke survivors wanted a longer program (4 weeks instead of 2) - carers saw behaviour change in stroke survivors as they began to use the stroke-affected arm in daily tasks, without prompting - mCIMT programs did not add to carer stress, rather that provided guidance and hope for the future What does this mean? - mCIMT is acceptable in the ESD rehab setting and we should be offering it to all eligible stroke survivors - as therapists, we shouldn’t place limits on patients by assuming therapy is too intense, or that it would add to carer stress - we should give stroke survivors and carers choice to participate, rather than making that decision for them Have a read and let me know what you think!

The administrative coordination of the European Reference Network dedicated to rare and complex epilepsies, ERN EpiCARE - Rare and Complex Epilepsies was awarded to Hospital Sant Joan de Déu Barcelona  in October 2023 under the leadership of Alexis Arzimanoglou.  👏 Some of EpiCARE's objectives include: improving #epilepsy care, promoting and organizing educational and training activities, fostering research and clinical trials in the field of epilepsy, supporting the development of comprehensive #healthcare policies, among others. ✅ Read the full article 👇

Don’t miss it! Monitoring of #EndOrganOxygenation and #OxygenDelivery optimization strategies in #Neonates during their first 48 hours of life. #Masimo #O3RegionalOximetry #Root #Macrocirculation #Microcirculation #CerebralOximetry #SomaticOximetry

It's always a bit surreal when you're a member of a panel, and add to that the nerves of being the only patient in a room full of experts! I was really honoured today to join this esteemed panel at the invitation of Prof. Asma Khalil, to give a voice the the patient perspectives on antenatal steroid use in twin pregnancies. The evolving face of research is now leading more to patient-centric approaches, especially with upcoming changes to the way clinical trials are conducted. Listening to Dr. Townsend speaking on the STOPPIT-3 trial, and the extra steps they have taken to ensure that parent voices have been heard, and their questions answered was refreshing, and this innovative approach should be held up as a model for future research projects including those around multiple births. Their resources include plain language summaries, video information and frequently asked questions, including answering those around participation in research. Really important steps in embracing patients as part of the team! More information about STOPPIT-3 - https://lnkd.in/eM3Shn6H Many thanks to the GEFOG Health Foundation, and Asma for this opportunity, and a big thank you to all the delegates for being open to hearing what patients and parents have to say about a diagnosis, and their role in research. To see this webinar, and previous ones, visit https://lnkd.in/eqp9faz2 #twinparent #patientperspectives #clinicalresearch #thefutureofresearch

🔍 What is SCN8A? Seizure Freedom Across Phenotypes from our recently published global consensus. We define seizure freedom as going 6 months or longer without a seizure. In this chart, you’ll find a comparison of how likely it is that different SCN8A phenotypes achieve seizure freedom: ➡️ Severe DEE: Rarely ➡️ Mild/Moderate DEE: Some of the time ➡️ NDD with Generalized Epilepsy (NDD w/GE): Some or most of the time ➡️ SE(L)Fie: Almost always  (not on chart)  📊 Visit scn8aalliance.org for comprehensive resources to help SCN8A families and clinicians manage care.

Learn more about Dr. Hussam Hawamdeh and the use of ECMO at Baptist Health.

In this AJMC - The American Journal of Managed Care interview, Dr Dalia Rotstein with the University of Toronto discusses barriers to multiple sclerosis (MS) research and care delivery. Watch here! #MultipleSclerosis #ACTRIMS24

Very interesting read Peter Hockey and Danette Wright of this paper. Refreshing perspective! - ‘Pragmatic Systemic Solutions to the Wicked and Persistent Problem of the Unprofessional Disruptive Physician in the Health System’ https://lnkd.in/gGqstkKc