Good to Live – Russian “school” for Huntington’s disease families

In August, two Huntington’s disease meetings took place in Russia. During the meetings, Huntington families learned more about the disease, treatment and care.

In Russia, the Huntington’s disease association Orphan People have teamed up with health care workers and scientists and established “Good to Live”. The initiative is a “school of health” for Russian Huntington’s disease families. 

To reach families throughout Russia, the team travel across the country. In August, they organised two meetings: one in Voronezh (1-2nd of August) and another in Samara (22-23rd of August, supported by the Presidential Grants Fund).

During the meetings, neurologists, therapists and physiatrists talked with family members about the disease, diagnostics, treatment, rehabilitation and care. 

Project Manager at Orphan People, Uliana Kartseva, stated that the meetings were characterised by a warm atmosphere: 

– It was a friendly and warm atmosphere. It is important for us to shed new light on the disease and unite in one, big family. We can help each other, give advice and make sure that no one is alone in this. 

– The meetings proved one more time that Huntington families can learn a lot from each other and that we are stronger together. 

Pictures

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Present in Voronezh: 

  • Dr. Yuri Seliverstov, doctor of medical sciences, neurologist, genetic scientist from the Federal Research Center of neurology, Moscow 
  • Dr. Timur Ivanov, doctor of medical sciences, head of the extrapyramidal disorder cabinet at the  Voronezh Consultative and Diagnostic center; rehabilitation physician, manual therapy specialist
  • M. Tigranyan, ergotherapist from the rehabilitation center «April»

Present in Samara: 

  • Dr. Yuri Seliverstov, doctor of medical sciences, neurologist, genetic scientist from the Federal Research Center of neurology, Moscow 
  • Dr. Timur Ivanov, doctor of medical sciences, head of the extrapyramidal disorder cabinet at the  Voronezh Consultative and Diagnostic center; rehabilitation physician, manual therapy specialist
  • Gukovskaya M., ergotherapist 
  • Dr. Chernikova V., doctor of medical sciences neurologist, genetic scientist from Samara regional clinical hospital