James A. Arthur Intermediate School is hosting a Hollywood-themed dance tonight to raise money for Team Zach, as they participate in Run to the Sun in 2 weeks. Rolling out the red carpet, Zach’s peers and community will dance the night away in support for their dear friend.
Yesterday Genetic Alliance announced the fifteen awardees for Phase I of its initiative to create a ‘white label’ of the Platform for Engaging Everyone Responsibly (PEER).
BBDF was one of the chosen candidates! We look forward to working with our new partners.
This week, the Gordon Research Conference on Lysosomal Disease, is being held at the historic Hotel Galvez in Galveston, Texas. For over 75 years, GRC’s high-quality meetings have been recognized as the world’s premier scientific conferences, where leading investigators from around the globe discuss their latest work. Invited speakers will focus on recent discoveries in lysosomes, the cell’s recycling centers which are damaged in Lysosomal Diseases like juvenile Batten disease, disease progression, and the relationship of lysosomal diseases to other diseases. Connections between lysosomal diseases, adult forms of neurodegeneration like Parkinson’s Disease, bone development, and cancer, provide us with important clues and potential drug targets across diseases. Beyond Batten Disease Foundation’s support contributes to the critical evaluation of recently collected data and what it means to treat juvenile Batten and other devastating Lysosomal Diseases.
Freelance Article by Helen Lok
Changing Our Dialogue about Batten Disease
Every day, families across America and around the world are facing an ongoing struggle. For each individual family, that struggle will be different. But what all families have in common is that everyday life inevitably brings its own set of challenges that all of us face. Some families face a more demanding struggle, and for these individuals, that struggle will come to play a huge role in defining who they are. But how we talk about that struggle and define it is also important. We talk about Batten Disease widely within the supportive community which has come together for solidarity, but it remains relatively unknown along with other NCLs (neuronal ceroid lipofuscinoses) in the mainstream community. Yet the more we talk about Batten Disease – as well as become more self-conscious about the language we use – the more we are able to reach out to others as well as spread awareness.