to give their children respiratory aid, 13 families with children who have a rare orphan disease, duchennecular dystrophy, came to the children's clinic, children with this disease have breathing problems during sleep, so that patients at home do not suffocate, parents in several days they were taught to provide assistance and use non-invasive lung ventilation devices , the family gave these devices home, they were purchased by a charity organization, one hundred units, before the war in ukraine, there were 800 patients with with duchenne's disease, it is easier for me to sleep that i even escaped, in which positions i could not sleep, now i sleep . the tasks of this project are to provide patients with non-invasive respiratory support at home . everyone who hears us urges us to be careful and find shelter, mother, we will continue when the war does not frighten us, they are still taking children to ukraine to treat them abroad in the children's cardio center in kyiv already they operated on two newborn boys from moldova, the children could not provide the necessary medical care at home, t

he has duchenne muscular dystrophy — a muscle—wasting condition.cation, ventilator checks, physio and the care that keeps him alive. it's made, like, my chest and my lungs weak and my heart. so i have to wear... more often i have to wear my ventilator now. i'm in the middle of something. they also face a constant struggle to find care staff to help. alex has been keeping a video diary for us since last october. i've been looking after dec all day because he's still getting over pneumonia. it's been go, go, go, go, go. i'm absolutely shattered. at 3:00, we had to do more chest physio. 5:00, we had to do more chest physio. 8:00, started — put his neb on and then had to, um... sorry, i'm knackered. declan's care is paid for by the nhs under a scheme known as continuing health care. it funds him for support at nearly £19 an hour, but his mum says it can cost up to £80 an hour for the skilled nursing care he increasingly needs. and with a fixed budget, it means they get fewer hours of help. at times, alex has gone 60 hours without sleep. i've now got to

bloomberg's advisors in bristol-myers squibb and participation from insiders notably eclipse, atc, duchennemyers squibb is he mentioned as a global pharmaceutical company, is cell therapy user and very proud to have them as an investor in this round and we are working with them on corporate partnerships. there is more news to come. ed: michael bloomberg, is the founder of bloomberg television. final question for me. if your research-based customers don't get fda approval you can't ramp up the commercial stage of output. how do you make sure that process does happen? fabian: in most cases there's the clinical trial required. there is one exception if it's already fda approved and has approval. if we stick exactly to the process that the pharma companies are running and switch up the underlying platforms in principle, that does not necessitate a new clinical trial and we can manufacture directly. caroline: thank you for bringing the enthusiasm. the cofounder of cellares . is huawei secretly building up a chip company and how the biden administration could take action. as we had to break were

he has duchenne muscular dystrophy, a muscle—wasting condition.s since last october. i�*ve been looking after dec all day. because he�*s still getting over pneumonia, it�*s been go, go, go, go, go. i�*m absolutely shattered. declan gets nhs continuing health care funding. it pays nearly £19 an hour for his support, but his mum says it can cost up to £80 an hour for the nursing care he increasingly needs. it means they can afford less help and at times alex has gone 60 hours without sleep. i�*ve now got to do the rest of the night, get declan up in the morning. then i�*m going to have to look after declan all day tomorrow. you have to do it yourself to the point where i�*ve ended up saying, ok, you win, you�*re going to have to put him into care, because i physically cannot do this any more. and then they�*ve told me that there actually isn�*t any residential care suitable. nhs spending on home based care has risen significantly in the last four years. but experts say that increase is being eroded by staff shortages and rising costs. dan harber run

expansion good to close, let me know that events like today highlight the value of working as a duchenne in general and the broader community in general. brookings scholars tackle our most pressing economic and social challenges, making from policy to financial regulation, and in the policy arena, being an effective policymaker means a commitment to continue learning and a drive to seek wisdom from policymakers like marty gruenberg, which is why today's event is so relevant. if you devote aaron klein and marty for making this event happen. i look very much forward to this discussion, and i now turn it over to brooking's dudes -- working is's aaron klein. mr. klein: thank you for joining us in person, online, or however you find it. i am making a chair on the center of regulation and market, and in financial regulation, there is a cycle. there's a crisis. there's new regulation, there's the regulation, and there's a crisis. that cycle has played on for a long time, and we can debate what contributes to what, why the cycle of phenomenon happen, but they do. we here are focused on this thro

he has duchenne muscular dystrophy — a muscle—wasting condition.e last october. i've been looking after derek all day because he's still getting over pneumonia. it's been go, go, go, go, go. i'm absolutely shattered. at 3:00, we had to do more chest physio. 5:00, we had to do more chest physio. 8:00, started put his neb on and then had to, um... sorry, i'm knackered. declan's care is paid for by the nhs under a scheme known as continuing health care. it funds him for support at nearly £19 an hour, but his mum says it can cost up to £80 an hour for the skilled nursing care he increasingly needs. and with a fixed budget, it means they get fewer hours of help. at times, alex has gone 60 hours without sleep. i've now got to do the rest of the night, get declan up in the morning. then i'm going to have to look after declan all day tomorrow. you have to do it yourself, to the point they've had me where i've ended up saying, "ok, you win, you're going to have to put him into care, because i physically cannot do this any more. and then they've told me that