BBDF attends Gordon Research Conference

BBDFLogoThis 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.

My Prespective: Helen Lok

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.

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