Tomsk, July 10, 2021
The European Huntington Association is happy to announce the launch of the international project «Moving Forward» in Russia! The first city to present the project was Tomsk, which is situated in Syberia.
17 members of the HD families and several doctors-neurologists attended the interregional “School of Health”, organized by the center “Orphan People”.
The general director of the “Orphan People” Marina Tretyakova started the meeting. She told about the activities of the center, it’s aims, about the ways to support HD families and appealed to people to unite, as we are stronger together.
The Ph.D., the leading research scientist of the Research Center of Neurology at the Russian Academy of Sciences, member of the Movement Disorder Society, European Academy of Neurology, member and coordinator of EHDN in Russia spoke about the history of HD, the natural development of the disease, nutrition aspects of HD and current research studies in HD field.
The neurologist and physician therapist Timur Ivanov and occupational therapist Maria Tigranyan from the rehabilitation center “April”(Moscow) addressed the auditorium and spoke about the methods of rehabilitation of HD patients in order to help families and improve the quality of their life.
The russian coordinator of «Moving Forward» Zaynab Umakhanova presented the project. The new project aims at including people from Huntington’s disease families in drug development by facilitating an active and long-lasting commitment from patients and family members.
The Project “Moving Forward” will focus on mobilizing Huntington families (particularly individuals in a premanifest/prodromal HD stage) to ensure there is a continuous flow of people signing up to take part in research, and prevent unnecessary delays in HD clinical trials due to the slow recruitment of participants.
This project will thrive to make the HD community move forward and be ready to enter and endure the several HD clinical trials planned for the near future – and showing that We are Here for Us.