Assistance to families of SMA
Charity Foundation of the help to families with spinal muscular atrophy
Let's build a future for these people,
which they deserve
which they deserve
About the fund
The main task of the Foundation is to carry out charitable activities aimed at helping and supporting children and adults with spinal muscular atrophy, their families and loved ones
What is SMA?
Spinal muscular atrophy is a heterogeneous group of inherited diseases that occur with the defeat / loss of motor neurons of the anterior horns of the spinal cord.
A genetic disease in which all types of inheritance are possible: autosomal dominant, autosomal recessive, X-linked, associated with mutations in the SMN1 and SMN2 genes encoding a protein involved in the synthesis of the spliceosome
A genetic disease in which all types of inheritance are possible: autosomal dominant, autosomal recessive, X-linked, associated with mutations in the SMN1 and SMN2 genes encoding a protein involved in the synthesis of the spliceosome
Classification of SMA types
Depending on the severity of symptoms, there are 3 main types of proximal SMA: SMU 1, SMU 2, SMU 3.
SMA I, werdnig-Hoffman disease
Age of manifestation of the disease: up to 6 months
Age of manifestation of the disease: up to 6 months
The most unfavorable form of SMA. Children lack motor development, have difficulty breathing, difficulty sucking and swallowing, do not hold their head, do not sit on their own.
SMA II, Dubowitz disease
Age of manifestation of the disease: 6-18 months
Age of manifestation of the disease: 6-18 months
Children with this form of spinal amyotrophy can eat and sit, but they never reach the ability to walk on their own. The prognosis in these cases depends on the degree of involvement of the respiratory muscles in the pathological process.
SMA III, Kugelberg-Velander disease
Age of manifestation of the disease: 6-18 months
Age of manifestation of the disease: 6-18 months
The least dangerous form of childhood SMA. The patient is able to stand, but is very weak, with a tendency to disability (movement in a wheelchair).
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| News In August 2019, Russia registered the drug nuzinersen ("Spinraza"), which is able to stop the progression of spinal muscular atrophy (SMA), and in some cases, improve the condition of people with this disease. Before that, there was no registered drug for the treatment of SMA in the Russian Federation. |
Need help?
If you or your loved one has SMA (spinal muscular atrophy) and you need help from our Foundation. We will try to do everything in our power to find a way to help you.
Articles about our Foundation's work
You can read articles about the work of our Foundation " Assistance to families of SMA"
Interview Kormushkina Alexander Alexandrovich for the editorial office of TV company "Vesti Altai"
Question-Answer
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The beneficiary's Bank
Tinkoff Bank JSC
Correspondent account
30101810145250000974
BIC
044525974
Recipient
Kormushkin Alexander
Recipient's account
40817810400017912627
Payment purpose
The transfer of funds under the contract number 5214118787 Kormushkin Alexander not subject to VAT
Card number for convenience:
5536913835336203
Tinkoff Bank JSC
Correspondent account
30101810145250000974
BIC
044525974
Recipient
Kormushkin Alexander
Recipient's account
40817810400017912627
Payment purpose
The transfer of funds under the contract number 5214118787 Kormushkin Alexander not subject to VAT
Card number for convenience:
5536913835336203
Our contact :