By Jessica Shurer, Director of Clinical Affairs and Advocacy at CurePSP
More than 5,000 neurology professionals from 105 countries attended the Movement 2023 International Movement Disorder Society (MDS) meeting. Movement disorders specialist neurologists, allied health clinicians, non-profit organizations, industry partners and patient advocates gathered, in greater numbers than ever, for the annual gathering. This August, MDS was held in Copenhagen, Denmark. For attendees it is a valuable chance to learn scientific and clinical developments in the field and, perhaps even more importantly, connect with colleagues who share a common goal: improving care and treatments for those living with Parkinson’s disease, atypical Parkinsonian syndromes, Huntington’s disease, dystonia and other movement disorders.
Kristophe Diaz, CurePSP’s Executive Director and Chief Science Officer, and Jessica Shurer, Director of Clinical Affairs and Advocacy, represented CurePSP at MDS this year.
“Throughout the year, several team members at CurePSP travel to attend the leading international meetings and conferences including MDS,” said Diaz. “These gatherings are unique and critical opportunities to advocate for what matters most to patients and families living with PSP, CBD and MSA. It’s also the most efficient method to make sure we let people know, including those starting their career in neuroscience and neurology, what we do, the work we fund and the network we create and support.”
Diaz and Shurer attended sessions on palliative care (which included a presentation by Dr. Jori Fleisher, director of the CurePSP Center of Care at Rush University), the multidisciplinary management of freezing of gait, and many others. The session “From basic science to the clinic: Atypical Parkinsonism (PSP, CBD, MSA)” was attended by several thousand people. A surprising and exciting moment for Diaz and Shurer came when speaker Dr. Marina Picillo, neurologist in Italy, promoted the resources offered by CurePSP. She even went as far as to include the CurePSP logo and an example of a CurePSP social media post in two of her slides and particularly highlighted the CurePSP Centers of Care program.
CurePSP also had two scientific posters at the 2023 MDS. In the poster titled “Determinants of care partner burden in atypical parkinsonian syndromes,” Shurer and Dr. Miriam Sklerov of UNC Chapel Hill shared the results of a multi-center, retrospective study that found that female gender (of patients and care partners) and the PSP diagnosis (especially compared to the MSA diagnosis) were predictive of higher sense of care partner burden. Shurer and Dr. Michiko Bruno of Queen’s Health System co-presented “Identifying a path to improve diagnostic delay and access to care for PSP, CBS, and MSA,” on behalf of six medical centers, which outlined the importance of reducing clinic appointment waiting times and educating general neurologists. These abstracts can be read here.
“These two posters demonstrated the momentum of collaboration across the CurePSP Centers of Care network,” said Shurer. “Our presentations fostered great conversations with attendees around the needs of people with PSP, CBD or MSA, and how we, as a neurology community, must work together to improve our care delivery.”
Additionally, Shurer enjoyed connecting with colleagues from the Parkinson’s Foundation, with whom CurePSP has built a partnership around professional medical education programming. In the days leading up to MDS, Diaz joined 260 neurogeneticists and researchers working to solve the genetics of Parkinson’s, PSP, CBD, MSA and related diseases. CurePSP also hosted a small dinner during MDS with available team members of CurePSP Centers of Care, which served as a special opportunity to continue to build relationships across the network and brainstorm research and outreach efforts at CurePSP, while enjoying a delicious Danish meal.
The team is already looking forward to MDS in Philadelphia, PA in fall 2024, where they plan to have a CurePSP exhibitor table and make sure they showcase the growing impact of their work.
