SMA Physics (Materials on Rehabilitation of Children with Spinal Muscular Atrophy)

Main article: Spinal muscular atrophy (SMA)

2023: Project Launch

A ФизикаСМА.рф project has been launched in Russia, which has collected materials on the rehabilitation of children with spinal muscular atrophy (SMA). With the help of visual articles and videos, families of patients will be able to learn about the main approaches to rehabilitation, understand the variety of technical means of rehabilitation, as well as get answers to many questions of concern to them. The SMA Family Foundation announced this on January 30, 2023.

According to the charitable foundation, about 200 children are born in Russia every year with spinal muscular atrophy - a rare genetic disease that leads to the gradual death of motor neurons of the spinal cord and muscle atrophy. More than 3,000 Russians live with this diagnosis in January 2023.

Therapy can stop the progression of the disease, but so far there is no way to restore motor neurons that have already died before it began. Therefore, rehabilitation is an integral element of the life of families with SMA. The combination of drug therapy and properly organized rehabilitation helps to maintain existing and develop new skills, which is of great importance for improving the quality of the whole future life of the child.

The SMA Physics website, relying on the recommendations of the Ministry of Health of the Russian Federation, as well as the experience of Russian and foreign specialists in the field of rehabilitation at SMA, details the methods of preventing common complications, the use of stretching exercises, orthoses, approaches to positioning, as well as the selection and use of numerous technical means of rehabilitation - strollers, seating supports, verticalizers and other devices.

The simple language of materials and the use of photographs, videos, illustrations, X-rays and schemes are designed to simplify the perception of specialized material for parents who are just beginning to restore the child's motor skills and help them better understand the explanations of specialists.

Our foundation works daily with a large number of families with SMA, and we know how difficult it can be to find proven sources of information, understand the numerous approaches to rehabilitation and, together with a specialist, choose those that will be optimal for a particular child. Therefore, we are very happy to take part in the development of such an up-to-date information resource that will help answer numerous questions from parents and will become a support in the rehabilitation of children with SMA and improving their quality of life, "said Olga Germanenko, founder and director of the SMA Families Foundation.

The project was created in partnership with the SMA Families charitable foundation and the pharmaceutical company Novartis Pharma LLC.