Personal Statement of Jaime Kulisevsky

I am a Clinical Neurologist specializing in Movement Disorders (MDs), a Neurology Professor, and a Researcher leading a Group with a special interest in Huntington’s disease (HD) over the past decade. Our interdisciplinary translational research group is based on a large HD outpatient clinic deeply committed to comprehensive patient care and participatory research centered around the needs of individuals with HD and their caregivers. Engaged in this clinic and coordinating the ENROLL study in Spain, I have participated in numerous clinical trials in HD, gaining valuable insights from patients, caregivers, researchers, and the pharmaceutical industry, shaping my understanding of their expectations and challenges. My past roles in other medical societies like the MDS and as a member of the EC of the EHDN have equipped me to contribute to the EHDN, enriching discussions and initiatives aimed at combating HD.

Looking ahead, the EHDN stands poised for significant expansion and innovation, driven by collaborative efforts among the many stakeholders in the HD community. This vision entails EHDN’s pivotal role in accelerating HD understanding through large-scale data sharing, interdisciplinary collaboration, and integration of cutting-edge technologies. In my vision, prioritizing patient-centered care, EHDN aims to foster a supportive ecosystem, enhancing access to ethical clinical trials, personalized therapies, and holistic support services.

By cultivating robust partnerships between academia, industry, and patient advocacy groups, and promoting research projects and the incorporation of young clinicians and researchers into the HD community through the promotion of education and internships at centers of excellence, EHDN is nicely positioned to lead advancements toward effective HD treatments and a cure.

I believe my trajectory and insights can offer valuable perspectives, catalyzing innovative solutions in our shared mission to alleviate the burden of HD. I humbly offer my candidacy to the EHDN Executive Committee, eager for the opportunity to continue contributing to our community and embarking on a collective journey to combat HD.