Milan, 27 September 2025
Theme: “From diagnosis to treatment: the role of the multidisciplinary team in dystonia” .
On Saturday, September 27, the Don Gnocchi Foundation hosted the sixth National Dystonia Day, promoted by A.R.D. (Italian Association for Research on Dystonia). A packed hall, focused presentations, and a strong sense of concreteness marked the event, centered around a simple yet powerful message: dystonia must be understood and treated by a team, with personalised care pathways that integrate medical, rehabilitative, and psychological expertise.
Opening and general framework
The presentation of the Don Gnocchi Center (Dr. Andrea Labruto) and the welcome address by ARD President Flavia Cogliati immediately highlighted the value of building networks between patients, clinicians, and institutions. The event also benefited from government support through the SMART 2.0 project. The conference chair, Dr. Anna Castagna, emphasised the importance of “tailor-made” pathways for each patient, with integrated care (neurological assessment, functional evaluations, toxin clinic, rehabilitation program, and follow-up).
Clinical and therapeutic aspects
Dr. Maria Antonietta Volontè (San Raffaele Hospital, Milan) explained dystonia as a movement disorder characterised by sustained abnormal movements, postures, and overflow. Diagnosis remains primarily clinical and requires careful distinction from other hyperkinesia’s. Classification by age of onset and body distribution (focal, segmental, generalised) is crucial because it guides therapeutic strategies.
Francesca Poma and Salvatore Caruso
Dr. Giovanna Zorzi (Carlo Besta Neurological Institute, Milan) focused on paediatric dystonia’s, which are typically more severe and often have genetic or structural causes. For children, neuromodulation surgery (DBS) and emerging techniques such as FUS (focussed ultrasound) may be effective in selected cases; however, treatment choices must be carefully tailored to the genetic and clinical context.
Prof. Alberto Albanese (President of ARD Scientific Committee) presented international data on DBS: while stimulation is effective, outcomes are heterogeneous due to differences in patient selection, surgical targets, and evaluation scales. Likewise, practical variability exists in botulinum toxin therapy: ultrasound and/or EMG (electromyography) guidance increase effectiveness, but require time, training, and adjustments in healthcare reimbursements.
Rehabilitation and the role of healthcare professionals
The rehabilitation section showcased the practical core of the multidisciplinary approach, with contributions from Don Gnocchi Foundation specialists. Physiatrist (rehabilitation specialist) Dr. Luca De Iaco and physiotherapist Dr. Alessandro Gastaldelli presented “movement retraining” protocols (e.g., Sprint, MISA), mirror therapy, sensory feedback, progressive exercise plans, and telerehabilitation via the Maya platform. The goal: to teach the brain new motor patterns, restoring control and confidence.
Speech therapist Valeria Crispiatico highlighted interventions in dysphagia, vocal disturbances, and musician’s embouchure problems — compensatory and restorative therapies that complement botulinum toxin and surgery. Occupational therapy (Chiara Barcella) and psychological support completed the picture.
Psychological support, presented by Dr. Alessandra D’Amico, emphasised the importance of addressing the non-motor symptoms of dystonia — anxiety, stress, insomnia, chronic pain — which can weigh as heavily as motor symptoms. In particular, mindfulness practice helps patients reconnect with the present, welcome bodily sensations without judgment, and reduce stress reactivity. While it does not eliminate symptoms, it enables patients to manage them with greater awareness, thereby improving quality of life and adherence to therapy. Alongside techniques such as EMDR/MDR (Eye Movement Desensitisation and Reprocessing), mindfulness thus becomes a concrete ally in the integrated treatment of dystonia.
Dr. Anna Castagna and A.R.D. President Flavia Cogliati
Dr. Anna Castagna and Dr. Alberto Albanese
Listening, identity, and “creative lightness”
Dr. Wolfgang Ullrich offered a valuable human and practical perspective: treating dystonia is not only about reducing unwanted movements, but also about listening to the patient’s story and restoring meaning to daily activities. Ullrich stressed the importance of narrative listening — understanding how dystonia impacts identity, social roles, and motivation — and suggested approaches to help patients free themselves from perfectionism and excessive control (particularly in musicians). Creative coaching techniques and strategies that reconnect patients with their original motivation (to play, to move, to participate) can help break tension patterns and bring rapid, concrete benefits to performance and everyday life. In short: psychological care is an integral part of rehabilitation, with tangible effects on confidence, autonomy, and quality of life.
Patients’ voices and closing remarks
In the afternoon, patients took the floor: personal testimonies, the presentation of a book, and a musical performance served as reminders that behind every clinical protocol lies a daily life to be improved. The closing round table simulated the real work of a multidisciplinary team, demonstrating how the best decisions arise from collaboration between specialists and the active participation of patients.
The day confirmed a clear path forward: treating dystonia means bringing together diverse expertise, listening to patients, and investing in training, research, and local networks to turn knowledge into tangible care.
Salvatore Caruso
Board Member ARD and Board Member Dystonia Europe
