we will take on this case, it will be an honest detective story.

prolonged downpours and melting snow led to large-scale. due to the rise throughout great britain , in england alone, about a thousand residential buildings were flooded, fields disappeared under water, as the local press reports, farm animals, cows and sheep are simply drowning. power outages began in a number of areas, and some roads and train stations were closed. the ruling conservative party called on the country's government to provide assistance to the affected britons. a large furniture warehouse is on fire in sochi; according to the ministry of emergency situations, by this hour the fire had covered 560 km, but the fire had already been localized, open burning. the warehouse is almost three times larger, it

is located on temeryazev street, it is quite close to the center, a high column of smoke is visible from afar, all emergency services are on site, according to preliminary data there are no casualties, no information has yet been received about the possible cause of the fire. passengers of northwind airlines have been unable to fly from moscow to venezuela for more than 10 hours; they were invited on the plane twice, but the flight was postponed over and over again. the total delay may exceed 15 hours; the airline explains this as a technical fault. today the airport warned of possible plane delays due to abnormal frosts. due to the weather, servicing aircraft, passengers and baggage transportation takes longer. we were supposed to take off today at 3:00 am, take off, but we sat on the plane for 4 hours, one of the engines failed, according to the captain. the reference was to... frosts, but as

they say even -55 planes fly normally, first they dropped us off at the airport building , brought another plane, assembled the crew, delayed, delayed, delayed, departures, hour, hour, hour, hour, in the end - the captain who arrived from the crew said that this plane would not fly, apparently, there are also some technical malfunctions, but they promise us a departure at 18:10, as they say, that a flight will arrive from cuba, on this plane we will fly wherever we need, during all this time, unfortunately, they only issued one voucher for food 450 rub. in this format and - on the water on drinks 100 rub. in russia there are more and more children whose new year's wishes have become a reality within the framework of the all-russian project tree of wishes, so gifts from the deputy head. government

victoria abramchenko received sophia from the city of novokuznetsk, she dreamed of skates, as well as twelve-year-old alisa from novosibirsk. the girl wanted to get oil paints. alice, this. victoria valerievna abramchenko gave you the gift you dreamed of and tickets to the governor’s christmas tree from the governor, thank you, thank you for the gift victoria, thank you victoria , the head of the ministry of education of russia also played the role of the new year's wizard, sergei krovtsov organized an excursion to the capital's zoo for angelina from yekaterinburg, the girl dreamed of seeing a panda , she came to moscow with her sister and mother, gifts for gifts, go quickly angelina. look here, what does he have? danil from orenburg received another gift from the head of the ministry of education sergei kravtsov; he dreamed of air hockey. the parcel was delivered by father frost and snow maiden. the minister congratulated danil on the phone on the new year. foundation circle

good is turning 3 years old; it was created by presidential decree to help children with severe, chronic and rare diseases. read more about the activities of the foundation, special report. i started writing this book when... i was in the hospital with my child, in the first year of my life we ​​were in the hospital very often, and i had to write down all its data, as the doctors demanded, now that it has already been published, i open this diary and i see, i remember those pages that i wrote

with a pen, they are stained with ink, because when i wrote this book, i cried, irina zlata’s daughter, my mother jokes, is golden in every sense, her treatment bypasses... we haven’t had such healthy children for a long time, a month later we were given a terrible incurable diagnosis. at just 7 years old, zlata is a trampoline champion. the tasks on trampolines are quite easy, but for me they are a bit difficult. and it's a little difficult for me,

so and, but i still like it because it entertains me. well, in fact, trampoline sports are by no means entertainment for zlata. why do patients with is it important to jump on trampolines for mycoviscidosis? 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 a patient with cystic fibrosis. does not solve the problem of cystic fibrosis, it only partially restrains it, the speed with which cystic fibrosis devours and destroys organs patient, and she is much faster than

the basic therapy drugs act on her, we are always behind the dose, it is insidious, it is unexpected, it can happen. anything at any moment. a breakthrough in the treatment of cystic fibrosis was the appearance of the drug trikafta, which specifically targets the damaged gene. true, you have to take it for life, but irina, a widow, zlata’s father and a military man died in syria, had no chance of paying for even one dose on her own, if not for the circle of good. from september 2023 zlata receives 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, uh, colds, uh , we had to go to the hospital, where we underwent antibiotic therapy, painful, intravenous antibiotic therapy, with the advent of a genetic corrector,

the child’s life, the quality of life improved - many times, and in - firstly, she practically does not get sick, and secondly, her health indicators have improved, improved in many ways, her external respiration function has improved. daily nightmare thousands of parents across the country, the idea that their children, excellent students and athletes, with intact intelligence, will not live to reach adulthood, without medicines for which the family will never be able to earn money, this was the case 3 years ago, before the creation of the circle fund of good. the most important result of his work was tens of thousands of lives saved, already more than 23 thousand children who receive help from the fund.

the circle of good was created by decree of vladimir putin in january 2021 with the aim of helping children with rare or orphan diseases, financial source state fund - increasing the tax on excess income of 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 increasing the rate on individuals, rdf. for those citizens who receive income over 5 million rubles. the circle of kindness

was led by priest alexander skachenko, the creator of the first children's hospice. for me, as a priest, good and evil are very tangible, and like nowhere else in hospitals in the country, we are faced with how cruel evil can be, but also how miraculous. and a rare or orphan disease, in total there are about 6.00 such pathologies

, approximately 300 of them are treatable, but since there are few patients, it is not profitable for pharmaceutical companies to invest in the development of the latest genetic drugs that correct the errors of nature, unless they compensate for the costs with reasonable prices. the management of the foundation came here from a children's hospice, we had absolutely first-hand knowledge of the problems and difficulties parents of children are faced with, we understood how much - everything and what walls the parents rolled up before the fund was created, these were courts, and absolutely impossible decisions were made, fees were very difficult for expensive medications, for which it was almost impossible to collect money, because collecting tens of millions to collect this annually is practically impossible, this is an impossible task for any parent, so we understood what a breakthrough solution this fund was and what responsibility we had. we enter application department, colleagues, good afternoon, good afternoon, the application department is where, in

principle, all the work of the fund begins, just now an application has arrived from the rostov region, applications come online, we immediately see them and take them to work, a small child with with the disease spinal muscular atrophy, as in any other cases, there is absolutely no time to wait, delay is like death, so everything works out very quickly. then we pass this information on to the fund’s expert council for consideration, a decision is made, and the information is immediately received the next day or on the same day, if there is a very urgent application to our purchasing department , spinal muscular trophy is a disease in which days are counted, due to a breakdown in the cmh-1 gene, the patient’s motor neurons gradually die off, a person... stops walking, swallowing, and eventually breathing. 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 process of 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 on sending the application and carries out the necessary procedures. research is compiled by a council and sends documents to the fund. parents see all stages of the application process. the fund informs through the state services portal about how decisions are made and when. there will be a supply of medicine, the fund has become a unique mechanism that does not exist anywhere in the world, our daughter vasya is fully developing due to her age, come on duch, let's show us how you can crawl here, come on, come on, to anyone, like that, uh

-huh, apparently, from the looks of it you can't tell that we have some kind of disease or something else, but ... does everything and sits even with us already vasilisya zyuzina from barnaul has had suma for 10 months, but fortunately her parents only know how this disease manifests itself from articles on the internet, it was such a shock for us, what is this disease, this is the first time we’ve heard about it at all, as always, we went on the internet, read all this, what they write there, started this to think about it, well, as usual, when we found out the cost of the drug there, at first we were completely shocked, that is, well, it’s unrealistic. the amount there, even if we sell everything we have, it ’s even less than half, that’s more than 100 million rubles, that’s how much the medicine zalgensma costs, the most expensive in the world, but one injection is enough to stop the disease if you manage to put the baby in the first weeks of life, 10 days from when we found out, on the thirteenth, 10 days have passed, we were given this drug, i don’t know of such

cases that medicines are given to someone so quickly they did it, it’s real, thank god, there are no manifestations at all. she is crawling and sitting with us, already trying to get up. the family learned about their daughter sma immediately after her birth through a blood test from the heel, which is done to all babies in russia on the second day after birth. before the foundation was created, neonatal screening included only five diseases. the circle of goodness allowed us to increase it to 36 and begin their therapy immediately. well, friends, let's just look at the facts: the children who should have died essentially aged. up to 2 years, in most cases they not only remained alive, their development corresponded to the development of children, their age, so these results, of course, they convinced us that it is necessary to include spinal muscular atrophy, but also primary immunodeficiencies. the chief non-staff geneticist of the ministry of health, sergei kutsev, head of the federal medical genetic center, where confirmatory

diagnostics of rare diseases is carried out, is on the expert council of the circle of good, along with the heads of leading children's hospitals.

screening, as a result, is how many children's lives we 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 russian drug for sma is already undergoing clinical trials on humans, diagnostic methods are being developed; 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 roman rodionov, duchenne dystrophy. you know, we couldn't even in our worst dreams assume that this could happen to us. it turned out to be a spontaneous mutation, and no one is immune from it. this progressive disease is considered

the number one genetic killer of boys worldwide. manifests itself in the form of muscle weakness, the child simply, how to say, loses strength with age, loses strength , muscles atrophy, not only the muscles of the legs, they start with the muscles of the legs, then rise higher and higher, the heart muscle, breathing muscles also suffer, ultimately boys sit in a wheelchair early, and about to say, well, the forecast is not very good. i was often tired and asked to be held, but the doctors at the district clinic only waved away the complaints: i went to the doctors for a long time and repeatedly,

because i felt that something was wrong with the child, that something was wrong, but of course they sent me away , i visited two, not even two, but three neurologists, orthopedists, everyone said that i was a very anxious, overprotective mother, that everything was fine with the child, boys are lazy, they walk later... they sit down later, with us somehow everything was a little late, late, but within age norms, but in the end we found a neurologist, who literally gave us a preliminary diagnosis from the first visit, after which the family went to moscow, repeated diagnostics, confirmation of the diagnosis of duchenne muscular dystrophy, a medical consultation, and in a matter of days an application to the circle of goodness, roma was injected with the drug vitolar, which... unexpectedly for everyone, immediately worked when he received it, i’m telling you, we ourselves were amazed by this, how it

’s all here, he just knows how as if strength had been poured into him, he began to run, although before that, well, in general, 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 ran away all the corridors in the hospital, it took us 12 hours to get him to sleep. it’s just that he 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 the most ordinary life, anyone can be lucky, jump, run, play hide and seek , and for rest we now have there is less and less time left, but son, 3 years ahead. about 90 diseases have already appeared, more than a hundred drugs. 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, spinal pathology, and hip joint pathology. the second point that needs to be emphasized is the possibility of our scientific developments regarding the metal structures that are used. begins to feel unwell, that is, he complains of pain in the hip, pain in the knee, pain in the joints, more of the lower part of the leg,

so we start going to the doctors, they said that it is the growth of the child’s bones. david’s mother 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 surgical intervention he would soon lose his life. we have the third stage - this is joint necrosis and we have the first diagnosis, which was according to mri, it was called aseptic necrosis, it’s just this joint, it’s dead, no blood flows there, what’s bothering you now, david, tell me, nothing, nothing at all, maybe then we won’t be treated, we will, we will, we will, st. petersburg doctors they explain in detail to the little patient that a high-tech operation awaits him; they will install him: the so-called electret is the latest domestic development. we implant an orthopedic electret directly to the focus of necrosis in the head of the femur. eleket - possesses nearby

effects, essentially like an electromagnet, which can be used as an external source, that is, here it is essentially an internal mechanism that triggers anti-inflammatory processes, which also activate the processes of restoration of both bone and cartilage tissue. after that, when... he knocks on the window, stands and hides, it ’s grandpa who’s with us, seven-year-old vera loves

to sing, music and dreams of learning to play the piano, but she doesn’t have enough arm length for full-fledged lessons, saphonroplasty, in general is considered the most ancient direct human disease, and there are sources from world artistic culture that prove that such people lived in ancient egypt at all times and eras, in ancient egypt they were even pharaoh kings, and with such a disease, and this is in fact a disease that is expressed by infestation. limbs, and this leads precisely to short stature. this disease does not seem as formidable as life-threatening as smy or duchenne muscular dystrophy, but how much it impairs the quality of life. children with salphonroplasia are children who have absolutely excellent intelligence, who have very excellent prospects for socialization in life, but unfortunately, their physique features affect the ability to self-care, and in institutions such as, for example, educational institutions, there is a huge amount of parental anxiety is connected with how the child

will perform at school. will he be able to study marame with other children, will he be able to, will he be accepted in this society? as my mother, yulia nesterova, head of an ngo, says not small people, 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 achondroplasia to grow up without surgery. in september, vera went to first grade and at the same time received this newest medicine. everyone was quite skeptical at that time, because research was being carried out, and we did not expect that the drug would appear earlier than 30 years later in russia, and we in no way in this case, they could not even imagine that so soon the drug would be accepted to fill the fund with a circle of good. our community, probably among all other communities, is very happy, because we did not have to fight for the drug, we received it as a gift, and of course we will not get tired of talking about it, this is a very big

gratitude. and the president’s initiative, which was implemented in this form and proved its effectiveness, my name is alexander, thank you for coming to us, thank you for inviting us, let’s hit the pin, 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 it. trikauts, body salinity dropped to 70, and six months later, body salinity was even lower than the norm for a healthy person, so in the summer we tested, that is, how a unique drug that corrects a broken gene allows the patient to live a full life, this is why the president created the circle of good foundation, so that children with diseases

can regain their childhood. it’s very sad to see that childhood returns to these children, that they can be like their peers. there wasn’t, the plane didn’t obey, i decided to eject, the only thing i had time to sleep was the assault, but we ejected. dear friends, i invite you to our next episode of the author’s program mesagon tv. russia is a country of which we are proud. we are proud to bring light and warmth around the world. we look forward with pride, forging new paths in the oceans and overcoming

gravity. we are proud of our successes, but we never rest on our laurels. discover the achievements of our country. come to the forum russia exhibition. now there is a short advertisement, immediately after watch the documentary film by alexey denisov, odessa, russian pearl by the sea, about the history and fate of the ancient city, both in tsarist and post-revolutionary times. we don't know which remedy will do it.

new year's morning