TSC Alliance

Thank you to our partners at Marinus Pharma for joining the TSC Alliance team on Wednesday during our annual planning meeting. We appreciate all your collaboration and your heartfelt support of the TSC community. #tscalliance #50Forward

Research Opportunity! Nominate a Compound for Preclinical Testing. The TSC Preclinical Consortium Steering Committee is seeking compound nominations. Learn more: https://ow.ly/KeSQ50SAE7W. To nominate a compound, please log in to ProposalCentral and complete our application: https://ow.ly/5JPp50SAE7Y 🚨 Application deadline: Monday, August 5, 2024, 11:59 pm EDT. 🚨 Questions? Please contact Zoë Fuchs, Manager, Translational Research at [email protected].

Ready to navigate adulthood with TSC? Join us for the first in-person 2024 TSC Transition Workshop in Memphis, TN! 🗓 Date: Saturday, August 3, 2024 🕣 Time: 8:30 AM - 5:30 PM 📍Location: Sheraton Memphis Downtown Don't miss this chance to: 🔹 Learn about medical transition guidelines when moving from pediatric to adult clinical care 🔹 Discover resources and support services available in the area 🔹 Explore employment, higher education and housing options for children after high school 🔹 Get legal insights on guardianship and financial planning 🔹 Network with leading TSC researchers and clinicians 🔹 Connect with other families and individuals in the TSC community Register for the workshop here: https://ow.ly/AuZk50SAtS7 Check out the workshop agenda: https://ow.ly/tk7L50SAtSb

Research Opportunity! Nominate a Compound for Preclinical Testing. The TSC Preclinical Consortium Steering Committee is seeking compound nominations. Learn more: https://ow.ly/KeSQ50SAE7W. To nominate a compound, please log in to ProposalCentral and complete our application: https://ow.ly/5JPp50SAE7Y 🚨 Application deadline: Monday, August 5, 2024, 11:59 pm EDT. 🚨 Questions? Please contact Zoë Fuchs, Manager, Translational Research at [email protected].

Have you heard of a Seizure Action Plan (SAP)? In general, a SAP includes health and medical information that helps people recognize seizures and take appropriate steps to keep the person with epilepsy safe from injury or damage caused by prolonged seizures. The concept was created in 2020 by Seizure Action Plan Coalition which was founded by Lennox-Gastaut Syndrome (LGS) Foundation, Dravet Syndrome Foundation and TSC Alliance. In 2023, Epilepsy Alliance America became the managing organization of the coalition. If you or someone you know has epilepsy, it can be very helpful and even potentially life-saving to share a SAP with family, friends, school or even work as long as you feel safe doing so. Read on to learn more about how to create a SAP and all the resources you need with the Seizure Action Plan Coalition. 💜

⭐ Check out this #tb video from the #IAMTSC campaign! ⭐ Join us in celebrating 50 years of the TSC Alliance and watch our journey of progress and promise. Save the date for our 50th Anniversary Gala: An Evening of Progress and Promise on October 25, 2024, at Cipriani 42nd Street, NYC. Together, we honor the past, celebrate the present, and look forward to the promise of tomorrow. Be a part of TSC Alliance history and purchase your ticket, sponsorship or commemorative program book ad here: https://ow.ly/iJjq50SCLGs #50Forward #tscalliance #tuberoussclerosiscomplex

Exciting news! The TSC Alliance has partnered with Patient Journeys to conduct a new survey to understand how tuberous sclerosis complex (TSC) impacts quality of life. Why Participate? ● Help others: Your input is invaluable. ● Learn and connect: Gain insights from our community. This is more than just a survey—it's a chance to make your voice heard and contribute to meaningful change in the TSC community. Your responses are confidential. Visit this link to complete the survey: https://ow.ly/jYBp50SCEZe

Ready to navigate adulthood with TSC? Join us for the first in-person 2024 TSC Transition Workshop in Memphis, TN! 🗓 Date: Saturday, August 3, 2024 🕣 Time: 8:30 AM - 5:30 PM 📍Location: Sheraton Memphis Downtown Don't miss this chance to: 🔹 Learn about medical transition guidelines when moving from pediatric to adult clinical care 🔹 Discover resources and support services available in the area 🔹 Explore employment, higher education and housing options for children after high school 🔹 Get legal insights on guardianship and financial planning 🔹 Network with leading TSC researchers and clinicians 🔹 Connect with other families and individuals in the TSC community Register for the workshop here: https://ow.ly/AuZk50SAtS7 Check out the workshop agenda: https://ow.ly/tk7L50SAtSb Le Bonheur Children's Hospital

Join us for the next installment of our "Ask an Advocate" series on Monday, August 12, 2024, at 8 pm ET featuring a call dedicated to creating Seizure Action Plans as students head back to school. Whether you're a parent, teacher or caregiver, this session is designed to equip you with the essential knowledge and tools to ensure the safety and well-being of students with epilepsy. Shelly Meitzler, Director, Outreach & Support and Elizabeth Skufca, Community Programs Manager at the TSC Alliance will provide valuable insights, answer your pressing questions, and share practical tips for creating and implementing effective Seizure Action Plans in educational settings. Don't miss this opportunity to learn how to support students with epilepsy and create a safe, inclusive environment for their academic success. Join us for an empowering discussion! Register here: https://ow.ly/EOpZ50SBOw0

Thankful for this amazing organization as they seek better treatments and a cure for all those affected by TSC, my twin girls included. TSC Alliance Truly, “We will give everything but up!”