Instead of scientific talks, the 21^st VPS13 Forum, held on 28 April 2025 focused entirely on questions submitted by people living with VPS13A and XK diseases, their families, and carers. 

Back in February, we shared a behind-the-scenes look at an important research project from Professor Lucia De Franceschi’s lab at the University of Verona. Her team has been investigating how VPS13A disease (also known as chorea-acanthocytosis) may contribute to early-onset muscle weakness — a symptom experienced by many patients, yet still poorly understood. 

Ruth Walker sends this update on research being conducted at the Icahn School of Medicine at Mount Sinai in NYC.

Joy Willard-Williford shares news of a recent online gathering of XK patients and their loved ones.

Neurodegeneration with Brain Iron Accumulation (NBIA) denotes a heterogeneous group of conditions, among them PKAN (Pantothenate Kinase associated Neurodegeneration). Patient blood may also show increased numbers of acanthocytes and PKAN may thus be considered a type of neuroacanthocytosis (NA). 

We’re proud to share an exciting milestone in the life of NA Advocacy: the launch of our new 2025–28 Business Plan and supporting strategies

These plans are the result of months of reflection, collaboration, and careful planning, designed to carry our charity forward with purpose, clarity, and resilience. At the heart of all three documents is our enduring mission: to improve the lives of people affected by neuroacanthocytosis (NA) syndromes through awareness, support, and research. 

As much as we sometimes focus on the present moment and immediate support for our community, looking towards the future is also very important. We are grateful to the scientists and clinicians who are looking into our conditions and have been with us for a long time, and we are also keen to connect with the next generation interested to take their research further and further.