Longboard Pharmaceuticals’ Post

Dravet Syndrome is a rare, genetic🧬, and severe form of #epilepsy - with just 1-2 children out of 500 with epilepsy likely to have this form. Since today is Dravet Syndrome Awareness Day, learn more in our easy-to-read page, here 👇! https://lnkd.in/eq5AUK_s Including links to Dravet Syndrome UK, Dravet Syndrome Foundation Spain, and Dravet Syndrome Foundation (US)! #DravetSyndrome #DravetSyndromeAwarenessDay #RareEpilepsy

 We apologize for missing CLOVES Syndrome Awareness Day, which is August 3rd. We are so lucky to have met Victor and his family! Victor's portrait was painted by Phyllis Pesaturo. "Victor is our little superhero!! He is a fighter and amazing despite everything up against him. Victor loves pizza, cake, cookies, to run and jump, me and his mommy."  CLOVES syndrome (CS) is a recently described rare disorder characterized by tissue overgrowth and complex vascular anomalies. CLOVES stands for congenital lipomatous overgrowth, vascular malformations, epidermal nevi and scoliosis/skeletal/spinal anomalies. CLOVES syndrome may affect the soft tissue, blood vessels, bone and internal organs. The manifestations are very variable ranging from mild to severe anomalies. These abnormalities are typically present at birth. The most common features are fatty masses, vascular anomalies, abnormal extremities, spinal anomalies, skin birthmarks and kidney anomalies. #rareallyear #rarediseases #rarediseaseresearch

Sheree Palmer’s life took an unexpected turn in 2008 when she suffered a spinal embolism. As a result, Sheree sustained a spinal cord injury and became a paraplegic, forever changing her life. Today, Sheree is sharing her story and experience of being part of 💥Project Spark and our eWALK* neurostimulation trial. Prior to going on the trial, Sheree was completely unable to walk, but fast forward 12 weeks and she had progressed so much. ✨ To learn more about Sheree's story visit: https://lnkd.in/gZu6nj4A *Important information: eWALK is a rigorous double blinded sham controlled clinical trial. Every volunteer receives 12 weeks of intensive exercise therapy. However, volunteers and scientists do not know whether a volunteer is receiving real or sham stimulation. This information will be available when eWALK results are finalised, which is anticipated to be in the first half of 2025. #ProjectSparkAppeal #SpinalCordInjury #fundraisingforacure #Neurostimulation

Traumeel: The Homoeopathic Solution for Sprains and Soft Tissue Trauma When it comes to treating sprains and soft tissue trauma, finding a natural and effective solution is a top priority for many individuals. And in the world of ,…Read more on the following link https://lnkd.in/enuHQ3b3

🌍 Today is International Dravet Syndrome Awareness Day! 🧠💜 This is a severe form of epilepsy where seizures are poorly controlled. It appears during the first year of life with frequent fever related seizures. Later other types of seizures appear, including myoclonus (muscle spasms). Status Epilepticus also may occur. Children with Dravet Syndrome usually experience poor development of language and motor skills, hyperactivity and difficulty relating to others. Click here to learn more: https://loom.ly/lONDuSw #DravetSyndromeAwareness #EpilepsyAwareness

World Glaucoma Day 2024: From history to date, here's all that you need to know about this important day.

Just out! Our study is the first to report the role of Immp2l, implicated in Autism and Tourette Syndrome, in enhancing Gpd2 structure and function, mitochondrial respiration, nonmitochondrial respiration, organ size and homeostasis.

We have just updated our Vici syndrome checklist with this paper https://lnkd.in/d92hEFvh

Courageous organization and members! Growing stronger for over thirty years.