Integral to the mission of the Dystonia Coalition (DC) are Patient Advocacy Groups (PAGs) that provide vital support, important collaborations, and help with bridging the gap between researchers and patients. Sixteen different patient advocacy groups with representation from the USA, Canada, and Europe support the Dystonia Coalition's goals of advancing the pace of clinical and translational research in the dystonias.
Each DC PAG has its own mission, board of directors and governance, and patient and healthcare network. One PAG liaison was elected to serve as the primary contact for DC Investigators, to streamline communications with one voice. Updates and communications among the PAGs are managed via conference calls and e-mail communications, and occasionally by webinar. By working together through the DC, we dramatically increase our resources while respecting the role each organization contributes to the dystonia community. The Dystonia Medical Research Foundation (DMRF) provides logistical and planning support to the Dystonia Coalition along with assisting with the accounting for various projects, which keeps all fund accounting and disbursement under one roof.
Many of the DC PAGs have provided financial support for Dystonia Coalition research projects or Career Development Awards including the Benign Essential Blepharospasm Research Foundation, Inc (BEBRF), Bachmann-Strauss Dystonia and Parkinson Foundation (BSDPF), Dystonia Medical Research Foundation (DMRF), National Spasmodic Dysphonia Association (NSDA), and National Spasmodic Torticollis Association (NSTA). One unique program established by the DC PAGs is the Travel Scholarship Award, which provides resources for junior investigators to attend Annual DC Meetings. These meetings are essential for meeting leaders in the field, for learning about the cutting edge in research, and for learning about funding opportunities through PAGs and other seed grants. Over 45 Travel Awards have been funded over the last three years, nearly all through the contributions of individual PAGs, including American Dystonia Society (ADS), BeatDystonia, BEBRF, BSDPF, DMRF, EDF, NSDA, and NSTA.
The PAGs also have embarked on two projects to complement the work of the Dystonia Coalition. These two projects are the Global Dystonia Registry for Patients and the Dystonia Brain Collective. The Global Dystonia Registry is managed by the PAGs and aimed at facilitating connections between patients and research projects, and so far, has 2,862 participants since it was launched in 2011. The Dystonia Brain collective is aimed at establishing a centralized brain bank where specimens can be collected and processed with standardized procedures that enable sharing of results, and so far, has collected eight brains. Our collaborative efforts are focused on creating an infrastructure for training, clinical trials, and a biorepository, all focused on dystonia, so that we can close the gap in patient care and find more effective treatments for all forms of dystonia.
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