February 15, 2023 in the building of Il Tumen RS (Ya) under the chairmanship of the head of the Standing Committee of the State Assembly (Il Tumen) RS (Ya) on indigenous peoples of the North and Arctic affairs, People’s Deputy E.H. Golomareva and on the initiative of the Chairman of the Association of patients with spinocerebellar ataxia type 1 and other neurodegenerative diseases of the Republic Sakha (Yakutia) O.G. Sidorova with the support of the Presidential Grants Fund of the Russian Federation with the participation of the Director of the YSC CMP, Doctor of Medical Sciences A.N. V.I. Chichiginarov, Chairman of the Health Committee of the State Assembly (Il Tumen) of the RS (Ya), held a working meeting on the provision of medical and social assistance to patients with spinocerebellar ataxia type 1 in the Arctic regions of the Republic of Sakha (Yakutia).
At the meeting, the chairman of the local ethics committee of the YSC CMP, Candidate of Biological Sciences S.K. Kononova, spoke about the ethical difficulties of DNA verification of SCA1. The head of the Center for Neurodegenerative Diseases (CDD) of the YSC CMP Clinic, Ph.D. T.K. Davydova, spoke about the work of the CDD on the treatment of patients with neurodegenerative diseases, medical and social problems in families with patients with SCA1.
The proposals made by the specialists of the YSC CMP to improve medical and social care for patients with SCA1 and their families were supported by government representatives in the person of the Chairman of the Standing Committee of the State Assembly (Il Tumen) Republic of Sakha (Yakutia) on issues of indigenous peoples of the North and Arctic affairs of People’s Deputy E.H. Golomareva and Chairman of the Health Committee of the State Assembly (Il Tumen) RS (Ya) V.I. Chichiginarov.
The participants of the workshop unanimously decided on the need to continue the study of the issue and strengthen state support in solving medical and social problems of families with SCA1.