Last week, our president, Emily Amerson, had the incredible opportunity to attend the Rare Advocate Development (RAD) Workshop in New York City! This impactful event brought together patient advocates, researchers, and industry leaders, all working toward a common goal—driving progress for the rare disease community.
The workshop focused on empowering advocates with the tools and knowledge needed to advance research, shape policies, and amplify the voices of rare disease families. Emily participated in insightful discussions on patient-driven research, effective storytelling, and policy advocacy, all of which will help strengthen our efforts at CTNNB1 Connect and Cure.
One of the most powerful aspects of the event was the sense of unity and determination among rare disease advocates. Each person in the room carried a story of resilience, a fight for answers, and a deep commitment to changing the future. Connecting with others who share this passion was both inspiring and motivating—proof that together, we are stronger. By learning from one another and standing as one, we can break down barriers, accelerate research, and ensure no family faces this journey alone.
Emily returned from the RAD Workshop energized and inspired, bringing back fresh ideas and strategies to help further our mission. We are excited to put these insights into action as we continue to fight for more research, resources, and support for individuals with CTNNB1 syndrome.
A huge thank you to Mahzi Therapeutics, Global Genes, and Rare Epilepsy Network for creating such an empowering experience! Stay tuned as we implement these new advocacy strategies and continue working toward a brighter future for our community.