18th VPS13 Forum:

Nutritional challenges among people with feeding dystonia and Medical Q&A

Monday, July 29th, 2024

from 2:00-4:00 pm CEST/UTC+2 (Central European Summer Time)

from 8:00-10:00 am EDT/UTC-4 (Eastern Daylight Time)

from 9:00-11:00 pm JST/UTC+9 (Japan Standard Time)

Z O O M   L I N K

https://lmu-munich.zoom-x.de/j/96713877799?pwd=QTZZSmdhVUxqM1hmQTZ4UlZqZU9FUT09

Meeting-ID: 967 1387 7799

Passcode: 555812

A G E N D A

Advocacy updates

Representatives of the Neuroacanthocytosis Advocacies

Nutritional challenges among people with feeding dystonia 

Martin Paucar, MD, PhD, (neurologist; Department of Clinical Neuroscience, Karolinska Institutet, and Department of Neurology, Karolinska University Hospital, Stockholm, Sweden), Charlotta Rubin (MSc, dietitian; Department of Neurology, Karolinska University Hospital, Stockholm, Sweden), Josefin Kyhle (speech and language pathologist; Department of Neurology, Karolinska University Hospital, Stockholm, Sweden).

Feeding dystonia is considered a hallmark of VPS13A disease but affects also people with XK disease. Here we will discuss how to manage feeding dystonia and swallowing difficulties in patients with these rare diseases. We are assessing the prevalence of feeding dystonia among people with VPS13A disease and exploring a rating scale to better evaluate this problem.   

There will be a 30 minute presentation followed by a discussion and Q&A session with the speakers and Elina Tripoliti (clinical specialist Speech Language Therapist in movement disorders, National Hospital for Neurology and Neurosurgery, London, UK). Please submit your questions or other comments for discussion, before Monday July 22nd to Despina Dinca, despinadinca@naadvocacy.org. 

If time permits, Drs. Paucar, Peikert, Danek, and Walker will answer questions related to other issues in VPS13A and XK diseases. Please submit these in advance by Monday July 22nd to despinadinca@naadvocacy.org. 

We hope to see many of you at the event, which we hope will result in an extensive exchange of observations and ideas. Apart from the presentations, the discussion is the main focus of the forum. 

The next meeting of the VPS13 forum is scheduled for Oct 28th.

With our best wishes,

Adrian Danek, Kevin Peikert & Ruth Walker

VPS13 Forum organizer team