in artek we can ply the sea on sailing boats, schooners and kayaks, all year round, the impressions are off the charts, because after all, it’s winter here in such warm weather , you can ride on such wonderful tayaks, i really liked it, it’s an unforgettable experience of going out to the sea , especially in january, in fact , the technique itself, this is difficult, but still worth it, while some of... russia, dozens of main courses of sweet desserts, of varying complexity are prepared by artek residents, we will make a dessert called custard cream, and i’m currently whipping eggs with sugar, hiking in the mountains, dance and music concerts, in artek every child will find something to do to their liking. new friends can be found here from all over

the country, from kaliningrad to vladivostok, they have gathered together in the south of russia. artyk surprised me by the fact that it’s very warm here, very beautiful nature, it’s generally -40 at my house , that is, we arrived, and it’s very warm here, every shift artek receives children from new russian regions, everything is gorgeous, the food in the canteen is very good delicious, the rooms are absolutely amazing internal structure, all shifts are similar to each other, we always touch on both... the patriotic theme and the relational theme, but each shift is still different from each other, and here in the name of the shift , a new year's fairy tale, from the new year until christmas in arteyka, children celebrate all january holidays. yana cherbata, andrey tirentev, host. crimea. the circle of good charity foundation turns 3 years old. it was created by presidential decree to help children with severe, chronic and rare diseases. read more. activities of this

fund in a special report by dari goneeva. enigou. describe when i was in the hospital with the child, in the first year of life we ​​were in the hospital very often, and i had to write down all her data, as the doctors demanded, now that it has already been published, i open this diary and see, i remember those pages , which i wrote with a pen, they are stained with ink, because when i wrote this book, i cried, irina’s daughter, zlata’s mother jokes in everyone...

at the age of 7, zlata is a champion in trampolining, trampolines are quite easy tasks, but for me they're a little complicated and it's a little challenging for me, so and well i still like it because it entertains me, but it's really trampoline. port for

gold is by no means entertainment, why is it important for patients with cystic fibrosis to jump on trampolines, and such people have very thick viscous macrota, which must be evacuated from the lungs. without therapy, a genetic disease leads to damage to the lungs, then transplantation is inevitable, but such an operation does not help everyone. in her book, irina talks about those patients who could not be saved. basic therapy for patients with... does not solve the problem of cystic fibrosis, it only partially restrains it, with the speed with which cystic fibrosis devours and destroys the patient’s organs, and it is much faster than the effect of basic therapy drugs on it, we always we are behind with mucous fibrosis, it is insidious, it is unexpected,

anything can happen at any moment. a breakthrough in the treatment of cystic fibrosis was the appearance of the drug trikafta, which specifically affects the broken gene, true, you have to take it for life, but... pay for even one dose yourself from irina, a widow, zlata’s military father died in syria, there was no chance, if not for the circle of good, since september 2023 zlata has been receiving life-saving medicine. my child lives the full life of a healthy child and has no idea that she is special. she often suffered from bronchitis and colds, and we had to go to the hospital where we were treated. with the advent of the genetic corrector, the child’s quality of life has improved many times over, firstly, it she practically doesn’t get sick, and secondly,

her health indicators have improved, improved in many ways, and her external respiration function has improved. the daily nightmare of thousands of parents across the country, the idea that their children, excellent athletes, with intact intelligence, will not live to reach adulthood, without medications that the family will never be able to earn money for, this was the case 3 years ago, before the creation of the fund circle of goodness, the most important result of his work was tens of thousands of lives saved. children who receive help from the fund, this is just the beginning, because that the foundation is constantly expanding its activities, as soon as a new drug appears, innovative, with proven effectiveness, it can also be available to russian children, it is very touching to see that childhood is returning to these

children, that they can be like their peers, jump on a trampoline , go to school, play, develop, engage in creativity, and this is probably the most important... result that became possible thanks to the president’s decision. the circle of good was created by order of vladimir putin in january 2021 in order to help children with rare or orphan diseases: the financial source of the state fund is an increase in the excess income tax for wealthy citizens from 13 to 15%. this should provide an additional 60 billion rubles annually. let me remind you that we are talking about using the funds that will be received as a result of the rate increase.

but also how a miracle can burst into a person’s life, the most important thing is that many people participate in the implementation of this miracle, doctors, geneticists and scientists participate, all residents of this country participate, who entrusted the fund with money to buy such medicines, we literally became the hands with which god creates his love in this world.

the fund and what responsibility lies with us, we go to the application department, colleagues, good afternoon, good afternoon, the application department is where, in principle, all the work of the fund begins, now an application has arrived from the rostov region, applications come online, we immediately we see them and take them to work, a small child with

the disease spinal muscular atrophy, like in any other cases there is absolutely no time to wait, there is no delay in death... so we work everything out very quickly, then we pass this information on to the foundation’s expert council for consideration, and a decision is made right away. arrives the next day or on the same day if the application is very urgent to our purchasing department. spinal muscular atrophy is a disease in which the days count down; due to a breakdown in the smn-1 gene, the patient’s motor neurons gradually die, the person stops walking, swallowing, and ultimately eventually and breathe. in the most severe form of the pathology, the child does not live to see 2 years of age, but there are already three effective drugs for sma. and now all russian children with this diagnosis are provided with them. the foundation has made the procedure

for applying for medicine very simple. parents can go to the state services portal and submit an application within 2-3 minutes. within 7 days, the subject makes a decision to send an application, conducts the necessary research, draws up a consultation and sends documents to the fund. parents see all stages of the application process. the foundation informs through state services portal. about how decisions are made when a drug will be delivered, it has become a unique mechanism that does not exist anywhere in the world, our daughter vasya is fully developing due to her age, let’s daughter show us how you can crawl, come on, come on, to anyone, just like that, uh, by the looks of it, you can’t tell that we’ve been diagnosed with some kind of disease or something. in general, she does everything, she sits even with us vasilya izyuziny from barnaul has already

had sma for 10 months, but let’s talk about how this manifests itself disease, her parents, fortunately , only know from articles on the internet, it was such a shock for us that this is a disease, this is the first time i’ve heard about it at all, as always, we went on the internet, read all this, what they write there, and started this to overthink it, well, as usual, when we found out the cost of the drug there, at first we would be generally... in shock, that is, well, it’s an unrealistic amount, even if we sell everything we have, it’s even less than half, even more than 100 million rubles , this is how much the medicine zalgensma costs, the most expensive in the world, but one injection is enough to stop the disease if it is administered to the baby in the first weeks of life. 10 days from when we found out, on the thirteenth, 10 days passed , we were given this drug, i don’t know of any cases where someone was given medicine so quickly, that’s really all.

with the heads of the country's leading children's hospitals, it is these people who decide what medications to purchase for their patients, and

it does not matter whether they are registered in russia or not; if a new drug appears in the world that can save a child, it is mandatory they'll bring it. screening methods, they allow us to identify diseases that, well, we call them diseases from the group of urea cycle disorders, in fact , ammonium, ammonia accumulates in the blood during these diseases, and in order to neutralize it, medications are needed. identify a child, say that you are sick, you will, now you don’t have a screen, later it will appear, screening as a result - this is how many

children’s lives we have saved. the creation of the circle of good foundation became an impetus for the development of the entire domestic genetics and pharmaceutical industry, a new the russian drug otsma is already undergoing clinical trials on humans, diagnostic methods are being developed, and in the future it will be possible to further expand the screening of newborns to include, for example, duchenne muscular dystrophy. my name is tatyana radionova, i am the mother of raman radionova. duchenne's muscular dystrophy , you know, we couldn't even imagine in our wildest dreams that this could happen to us, it turned out to be a spontaneous mutation, and no one is immune from it, it's a progressive disease, considered the number one genetic killer of boys in the world all over the world, manifests itself in the form of muscle weakness, and the child simply, how to say

, loses strength, with age, loses strength, muscles atrophy, not only... well, the prognosis is not very comforting, let’s say for children with such a disease, the first signs of the disease are mother roma radionova noticed when her son just started. walk, he stumbled out of the blue, he was often tired and asked to be held in his arms, but the doctors at the district clinic only waved away the complaints: i repeatedly turned to the doctors for a long time, because i felt that with something is wrong with the child , something is wrong, but of course they sent me, i saw two, not even two, but three neurologists,

orthopedists, everyone said that i was a very anxious, overprotective mother, that the child everything is fine, the boys are lazy , they walk later, sit down later, somehow everything was a little late, but late, but within the age norms, but in the end we found a neurologist, who literally gave us a preliminary diagnosis from the first visit , after that the family went to moscow, repeated diagnostics, confirmation of the diagnosis of duchenne muscular dystrophy, medical consultation and in a matter of days an application to the circle of goodness. they introduced the drug viltolar , which unexpectedly worked for everyone immediately when he received it, i ’m telling you, we ourselves were amazed at how it all happened with him, he just , you know, as if power had been poured into him, he started running, although before that, well, he could barely move with us, he walked, he couldn’t jump, he couldn’t run, he could just

walk quickly, but he just ran, he kept running away corridors in the hospital, they couldn’t put him down , he just started running, jumping, flying, it feels like he was brought in thanks to the circle of good foundation, our child runs, jumps, makes us happy every day, we now live a very ordinary life, we like to be lucky, jump, run, play hide and seek, now we have less and less time to relax, right, did you play with yourself? over the past 3 years , about 90 diseases and more than a hundred drugs have appeared on the fund’s lists. in addition to drug therapy, the circle of good funds other new treatments. these are surgical approaches to the treatment of a rather complex and severe category of patients with orthopedic pathology: pathology of the spine, pathology of the hip joint. the second point

that needs to be emphasized is the possibility of our scientific developments concerning. at some point the child just starts to feel bad, that is, he complains of pain in the hip, pain in the knee, more in the joints, more of the lower part of the leg, so we start going to the doctors and they said that it’s growth baby bone. mom david was not reassured by this answer, she saw

that her son was limping more and more every day, finally the child had an mri, it turned out that david had a rare disease, in which without surgery... directly to the focus of necrosis in the head of the femur or. tert has a number of effects, like essentially an electromagnet that can be used as an external source, that is, here it is essentially an internal mechanism that

triggers anti-inflammatory processes, which also activates the processes of restoration of both bone and cartilage tissue. after this, his mother hopes, david will be able to not only walk again, but also return to sports, maybe not acrobatics, but definitely swimming. he will also run and jump, it just takes time. time is probably the most important thing in our disease to go through this entire rehabilitation after surgery. the circle of good foundation has already changed the healthcare system in the country and continues to change the entire social environment in which people with special needs live. he knocks on the window, hides, it’s grandpa who’s messing around with us. and dreams of learning play the piano, but for full -fledged practice she does not have enough arm length, diagnostic

alphondroplasia is generally considered the most ancient direct human disease, and there are sources from world artistic culture that prove that such people lived in ancient egypt in all times and eras and in in ancient egypt, there were even pharaoh kings with such a disease, and this is in fact... limbs, and this leads precisely to short stature. this disease does not seem as life-threatening as sma duchenne's amyodystrophy, but how much it worsens the quality of life. children with alphondroplasia are children who have absolutely excellent intelligence, which has a very excellent prospect for socialization in life, but unfortunately, their physique features affect the ability to self-care, and in institutions such as educational institutions, there is a huge amount of anxiety parents. is connected with how the child will perform at school, whether he will be able to study with other children, whether he will be able to, whether he will accepted in this society. as my mother, yulia nesterova, the head of the ngo, we are not small

people, says, until recently it was possible to slightly lengthen the limbs only with the help of the ilizarov apparatus, but this is a traumatic method and is not suitable for everyone. however, 2 years ago a genetic drug appeared in the world that allows people with sochondroplasia to grow up without surgery. in september, vera went to first grade and at the same time. 30 years later in russia, and in no case could we even imagine that so soon the drug would be accepted for filling the circle of good, our the community, probably from all other communities, is very happy, because we didn’t have to fight for the drug, we received it as a gift, and we won’t get tired, of course,

thank you for coming to us, thank you for inviting us, let’s check let’s remember, irina martianova specially came from orenburg to moscow to personally present her book to alexander tkachenko and talk about how the life of her daughter zlata has changed thanks to the circle of good foundation; a separate chapter has been written about this. after a month of taking trikavata, salinity body decreased to 70, and six months later the body’s health was even lower than the norm for a healthy person, so in the summer we took a test, that is, how unique a drug that corrects a broken gene allows the patient to live a full life, for this purpose the circle of good foundation was created by the president, so that. .. children with illnesses can have their childhood back.

attention to all personnel, attention to the personnel, we begin the movement, we begin the movement, your task is to deliver the wedge-sided contact, equipment, personnel, it depends that there is any ground there, here and here, oh, the sight appeared immediately, guys. which crew is anti-terrorist, it turns out that they completed the task here, then bet to bam, with bamo, respectively, again the rotation is constant, they walk in circles, the machine gunner, because the healthiest, well, from the very first there was suspicious activity, give a tip to use artillery, upon arrival at the scene of destruction, report the results.

there are two more victims of ukrainian shelling in belgorod, one of them has already been operated on. the ukrainian armed forces hit the city again that night, as the governor reported, the air defense system was activated. about ten air targets were shot down, but windows in houses were broken and cars were damaged. in the city, which is being restored after the ukrainian riots on december 30, today it plans to increase the number of construction crews. russian regions continue to present their achievements at vdnh. as part of the exhibition russia, today is the day of the donetsk people's republic. the program includes a performance by donetsk musicians, a puppet show, the launch of an interactive painting of donbass, and the distribution of new year's gifts. south. accused the north of

provocation after the dprk fired artillery salvoes towards the border islands. yonhap news agency reported that about 200 shells fell into the sea. all residents of yongpondo island were evacuated as a precaution. south korea has already responded with its own shooting. however, according to the agency, siul planned these exercises in advance and it was with them that the evacuation was connected. hundreds of german farmers blocked the ferry on which vice-chancellor robert habeck wanted to return home after vacation. the protesters demanded a reduction in transport taxes for agricultural workers . farmers tried to storm the ferry, however, hawick's guards and three dozen police officers were able to repel the attack. the ferry still had to set sail to disembark the officials in a safer location. immediately after the advertisement ours.