Cerebral Palsy Cymru’s Post

🧠 Today marks SCN8A Awareness Day🧠 We uplift the amazing advocates, individuals living with SCN8A, and their families who tirelessly share their stories to compel and inform change in the epilepsy space. It was in partnership with these community leaders that Elevate Advocacy learned of all the different ways SCN8A Developmental and Epileptic Encephalopathies (DEEs) can impact a person's life. We learned how unique and individual a person's experience could be and that seizures might be only one of many health priorities. From gastrointestinal issues to hypotonia, a person and family may have many different physical and emotional needs beyond seizure. Thanks to every single advocate, individual, family member, health care professional and researcher in the SCN8A space willing to share their story, experience, and data! Science is moving forward because of your contributions, and every day we better understand this incredibly complex disorder. One day, we hope a novel treatment or cure will follow! We thank The Cute Syndrome Foundation and International SCN8A Alliance for their continued leadership in this space. https://lnkd.in/g9m7-krZ https://scn8aalliance.org Image description: four purple hearts of varying sizes

This was real pleasure to do and an equal honour to have been asked to contribute. Dr Adelina McLeod talks to Chris Breedon about causes and drivers of conflict, its impact on individuals and its wider impact, ways to mediate and resolve conflict, and whistle-blowing. https://lnkd.in/e-qJWyHt #mediation #mediationservices #conflictresolution #adr #disputeresolution

This was real pleasure to do and an equal honour to have been asked to contribute. Dr Adelina McLeod talks to Chris Breedon about causes and drivers of conflict, its impact on individuals and its wider impact, ways to mediate and resolve conflict, and whistle-blowing. https://lnkd.in/e-qJWyHt #mediation #mediationservices #conflictresolution #adr #disputeresolution

🧠💜 𝐓𝐨𝐝𝐚𝐲 𝐢𝐬 𝐈𝐧𝐭𝐞𝐫𝐧𝐚𝐭𝐢𝐨𝐧𝐚𝐥 𝐄𝐩𝐢𝐥𝐞𝐩𝐬𝐲 𝐃𝐚𝐲, the annual awareness initiative organized by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE). At Julius Clinical we join hands with the global community to raise awareness and support those affected by epilepsy. Let's continue to work together towards a world where epilepsy is better understood, and those living with it receive the support and care they deserve. https://lnkd.in/gxZ3QKt

Let's make a meaningful impact this March! Join Epilepsy Action Australia in Illuminating Hope for the 250,000 Australians facing epilepsy. This exclusive Gala Dinner at Crown Sydney on March 22 is not your typical event; it's an opportunity to align your business with a cause that matters. Why Engage? Epilepsy is more than a medical condition; it's a life-altering challenge. "Illuminating Hope" is our commitment to raising awareness and providing support. What's In Store: Entertainment: Dance along to the Field Brothers band and meet our beloved Purple Wiggle, Lachy Gillespie. Inspiration: Engage with resilient panelists and guest speakers who have lived a life of Epilepsy. Networking: Connect with like-minded professionals in an evening of camaraderie. Why Attend? Demonstrate your commitment to social impact by supporting epilepsy education, research, and community initiatives. Secure Your Spot: Ticket sales close on March 12. Be part of a purposeful night out! Let's make Purple Day 2024 memorable and illuminate hope for those affected by epilepsy. Individual tickets or tables of 10 are available to purchase. Purchase Tickets: Illuminating Hope - https://loom.ly/miUpzqc #CorporateResponsibility #PurpleDay2024 #EpilepsyAwareness #IlluminatingHopeGalaDinner #CrownSydney #BusinessImpact

Today we join with the global facioscapulohumeral muscular dystrophy (#FSHD) community to celebrate World FSHD Day, to raise awareness for one of the most common forms of #musculardystrophy. FSHD is a serious, rare, hereditary muscle-weakening condition marked by life-long, progressive loss of muscle function that causes significant pain, fatigue, and disability. As we continue to advance our Phase 1/2 FORTITUDE™ clinical trial in adults with FSHD, we look forward to potentially bringing a much-needed therapy to people living with this devastating condition which currently has no treatment options. #WorldFSHDDay See our press release: https://lnkd.in/e4PHvEdk