HOPE for Epilepsy

Throughout this month, we have donated 74 Sleep-Safe anti-suffocation pillows to children and teenagers who experience convulsive (tonic-clonic) seizures during the night, to promote safe sleeping. #epilepsy #hopeheroes #seizure #sleepseizures #tonicclonicseizures #nocturnalconvulsiveseizures #sleepsafe #antisuffocationpillow #pillowproject #hopepillowproject

Thank you to Young Ambassador Blake Gibbons and Volunteer Lila Mandel for representing HOPE yesterday at the Woodhouse College Careers Fair. Thank you to the staff at Woodhouse College for giving our charity the opportunity to meet students in the local community, to raise awareness of epilepsy and to recruit volunteers.

Fun fact: Saint Valentine is commonly recognized as a patron saint of epilepsy. Various theories attempt to explain why St. Valentine is linked with the condition. One explanation is that the name 'Valentine' resembles the German word for 'fallen,' which is an old term for epilepsy. Another theory suggests that St. Valentine healed a young woman who had epilepsy and engaged to be married. Legend has it that in the 3rd century, a bishop named Valentine cured the son of a Roman orator of an epileptic seizure. Christian artworks frequently depict St. Valentine, alongside people experiencing seizures, and he is often depicted in sculptures with either children or adults showing signs of a seizure. It's speculated that St. Valentine's reputation for healing those with epilepsy led to his prominent role as a patron saint.

We're very grateful to Eve Grafton (to whom we provided a seizure alert monitor and an anti-suffocation pillow for her son) for raising funds to support HOPE & Epilepsy Action's work!! In January, she braved harsh winter conditions to swim in Coniston Water, Lake District daily. Eve raised an amazing £828 for HOPE and close to the equivalent for Epilepsy Action. We'll use this money to buy anti-suffocation pillows. Here's a link to Eve's Just Giving Page: https://lnkd.in/eBAJs-ht

Today is International Epilepsy Day To raise awareness of paediatric epilepsy, we're sharing a short film created by HOPE Young Ambassador Blake Gibbons and featuring HOPE Vice Chair Andrea Ryan They spoke about the vital hands-on, practical support the HOPE team offers to families of children with epilepsy. The film can be viewed by following this link: https://lnkd.in/ejw8bx2J #Epilepsy #MyEpilepsyJourney #EpilepsyAwareness

THANK YOU: We would like to thank Rachel Keyes and her friends for participating in 'Dry January' to raise funds for HOPE. They have done a wonderful job, raising a fantastic £450!! The money that's been raised will be used to buy anti-suffocation pillows to donate to children in need. Here is a photo of Rachel's daughter, Ruby, to whom we donated a pillow 💜💜 To donate, follow the link to the Just Giving page here: https://lnkd.in/e7J_KSjz

Last month, we donated 68 anti-suffocation pillows to help children and teenagers who have nocturnal convulsive seizures. You can find information about our pillow donation project at https://lnkd.in/gPZhCRE6.

🎓✨ From overcoming obstacles to achieving greatness! ✨🎓 Daisy Kelly, a HOPE for Epilepsy Young Ambassador, is a young woman whose journey has been nothing short of inspiring. Despite facing multiple health challenges, Daisy never let anything hold her back from pursuing her dreams. Last month, she graduated with a Masters degree in nursing research from the prestigious University of Birmingham! 🎉🩺 Daisy's determination, resilience, and unwavering passion for healthcare have driven her every step of the way. This is a testament to her strength, perseverance, and the power of never giving up. 💪🏼 We couldn’t be prouder of you, Daisy! Here’s to your future in nursing! 🌍💫 #GraduationDay #NursingJourney #MastersInNursing #Resilience #Inspiration #HealthcareHero

STUDY: The Dravet Syndrome Foundation in Spain have asked us to advertise a study that they're conducting. Please see the details of the study below, in their own words: Dear Families, We would like to invite you to take part in a study that is being conducted by the Dravet Syndrome Foundation Spain. A delicate and difficult topic will be investigated, but we believe that it is important to know more about it in order to improve its approach in the future. The questionnaire is a study on the impact of the risk of Sudden Unexpected Death in Epilepsy (SUDEP) in the families of people with Developmental and Epileptic Encephalopathies (DEEs). The study aims to answer several important questions: • How does the risk of SUDEP affect families of people with DEEs? • Is there professional support available and effective to help families cope with this risk? • What measures are being taken or should be taken to reduce the risk of SUDEP and support affected families? To participate, you have to go to the following link https://lnkd.in/eg92Jc7j At the beginning, you will be asked to digitally sign an informed consent form, where you will find details about data protection and processing. If you have any questions, do not hesitate to contact Dravet Syndrome Foundation Spain through reserach@dravetfoundation.eu #dravetsyndrome

THANK YOU: We'd like to thank the Barrie Wells Trust team (seen in the photo) for the amazing sporting & entertainment events that they organise for children with serious illnesses or disabilities. The feedback from HOPE for Epilepsy families who've attended Barrie Wells Trust experiences is outstanding. We're very grateful!! #barriewellstrust #barriewellstrustbox4kids