Por Silvana Espirito Santo- Rio de Janeiro.
Alessandra teve uma gravidez tranquila e contava os dias para a chegada do primeiro filho, um menino. Desejava sair de São Paulo para Minas Gerais levando seu pequeno para conhecer suas amigas e sua família. Já Alailson, seu marido, de uma família musical, sempre perguntava qual instrumento seu menino gostaria de tocar – violão ou sanfona? Mas sempre comentava que desejava presentear o filho com um piano. Arthur nasceu no dia 8 de novembro de 2018, com 3.370 quilos e 51,5 centímetros, chegou com grandes olhos pretos e hoje já é quase um “rapazinho”. Mas Arthur tem uma doença rara, grave e progressiva, conhecida como AME (Atrofia Muscular Espinhal), que atinge o sistema nervoso, aquele que controla os movimentos do seu corpo e até da sua respiração.
“Toda criança tem seu tempo. Não víamos nada de tão diferente para uma doença tão grave. Alguns pediatras não identificaram a AME. O diagnóstico veio aos três meses. Chorei muito e foi difícil dar a noticia para a família. Não imaginávamos a gravidade, mas a forma como chegou para nós foi muito difícil, o mundo desabou. E os sonhos foram para a gaveta.”, relembra Alessandra Ferreira Santos, mãe de Arthur Belo.
Alguns sintomas podem confundir e atrasar um diagnóstico mais preciso e precoce, para ajudar a descobrir não só a enfermidade, mas também o nível de gravidade da doença – que possui marcadores de I a IV, sendo AME Tipo1 a mais severa. Estatísticas mostram que a Atrofia Muscular Espinhal já é a maior causa genética de morte de crianças de até dois anos de idade. Atualmente, o AME já pode ser diagnosticado com o “Teste do pezinho” e o “Teste da bochechinha”.
E como dizer, reagir, conviver e dar conta de uma notícia tão angustiante? Para as vinte e nove famílias de crianças de todo o país, cadastradas no endereço de campanha online para arrecadar fundos para tratamentos de crianças com AME (@campanhas_amebrasil), a solução encontrada foi expor suas dores nas redes sociais. Campanhas por auxílio financeiro para conseguir importar o medicamento mais caro do mundo. Fabricado nos EUA pela Novarts e indicado para tratamento dos bebês diagnosticados com a doença antes de completarem dois anos de vida, já que pesquisas naquele país apontam que se aplicado até os dois primeiros anos de idade o medicamento pode reverter muitas das perdas motoras da criança.
Foi em 2019 que a FDA, agência reguladora de medicamentos dos EUA, chancelou o uso do Zolgensma para o tratamento da AME e uma luz no fim do túnel se abriu para estas famílias no nosso país. Uma esperança que tem um sentimento dúbio, já que o medicamento, em dose única custa R$11 milhões, além das despesas referentes as necessidades do tratamento, como internações e exames, onde pode somar mais R$1 milhão nesta conta. No Brasil, foi publicado no Diário Oficial de 17/8/2020 a homologação, pela ANVISA, para a comercialização do medicamento no país.
Mas o que falar para as famílias com suas crianças com AME que completarão dois anos antes do Zolgensma estar disponível para venda no país? E como será este trâmite dentro do SUS para tratar as crianças já diagnosticadas? Para algumas famílias, além da busca por auxílio de vaquinhas para custear o tratamento, eles constituem um pedido judicial para que o Sistema Único de Saúde (SUS) realize o tratamento com o remédio vindo dos Estados Unidos. Que acontece a partir do ganho da causa por liminar judicial, quando o SUS complementa o valor que falta para o tratamento, a partir do montante arrecadado na campanha online da criança.
Para Arthur Belo, o menino dos grandes olhos pretos, diagnostico com AME1 aos três meses de vida, o “tipo” mais agressivo da doença, o tempo está se esgotando. Mas sua mãe, Alessandra Ferreira Santos, que aos 28 anos deixou o emprego para cuidar do seu único filho em tempo integral, está em busca de ajuda financeira para salvar seu bebê, campanha que tem apoio até de artistas famosos. Ela e seu marido, o técnico de celular Alailson Belo, são pessoas simples, sendo o valor do tratamento, bem como as despesas referentes aos cuidados que Arthur necessita em virtude da AME, onerosos para uma família brasileira de baixa renda.
Arthur e muitos outros bebês, meninos e meninas que poderiam estar brincando na praça do bairro, lutam contra o tempo e contra uma doença neurodegenerativa que, além da atrofia, pode levá-los à morte precoce.
Contar a história de Tutu, como é carinhosamente chamado o bebê Arthur, é também falar das muitas famílias com crianças com AME. Famílias que dependem de vaquinhas, do SUS ou mesmo da Novartis, para que possam ter uma nova oportunidade de vida para os seus filhos e, quem sabe, desengavetar antigos sonhos.
No site da Novartis, textos esclarecedores sobre AME, pelo link https://conteudos.novartis.com.br/pt-br/atro%EF%AC%81a-muscular-espinhal.
Entidades de apoio AME:
AAME: Amigos da Atrofia da Medula Espinhal
ABRAME: Associação Brasileira de Atrofia Muscular Espinhal
DONEM: Associação dos familiares e amigos dos portadores de doenças Neuromusculares
Espaço Viva Íris Terapias Neuromotoras
INAME: Instituto Nacional da Atrofia Muscular Espinhal
Como ajudar Arthur Belo:
Vaquinha virtual: http://vaka.me/641285
Depósitos em contas bancárias:
Itaú: Agência 8111 Poupança 13027-7
Bradesco: Agência 000084-1 Poupança 1004727-7
Santander: Agência 0001 Poupança 600524961
Caixa: Agência 4051 Poupança 107514-5 (operação 13)
Banco do Brasil: Agência 1194-0 Poupança 33.375-1 (variação 51)
CONHEÇA, SIGA E APOIE ARTHUR BELO:
facebook.com/amearthurbelo
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Where to study music in the UK?
Studying abroad is a complex and expensive business: the cost of a year can vary from hundreds of thousands to one and a half million rubles per year. However, there are many grants and scholarships available, some of them covering up to 100% of the tuition costs. You can learn about the subtleties of preparing a portfolio for admission and receiving scholarships at the exhibition of British education “Study UK: Discover You”. We advise you on which educational institutions you should pay attention to.
BIMM (British & Irish Modern Music Institute)
The music industry in miniature .Britain’s most prestigious school of contemporary music. It teaches not only how to play a musical instrument well, but also how to interact with the industry. Among the directions — vocals, playing instruments, music business, production and songwriting (it is taught, for a moment, vocalist Lamb).
On the territory of the Institute there are several rehearsal bases and small studios: young musicians gather groups, record demos and organize concerts without leaving the walls of their native University, and student journalists publish LDN magazine, where they talk about their colleagues and interview masters from big show business. Senior colleagues (ranging from Chuck D to Brian may) also visit students, telling them about the intricacies of their work and leaving Souvenirs: in one of the halls, for example, you can admire an autographed Niall Rogers guitar. In General, there is a whole model of the music industry-and the model is quite working. As a result, bimm alumni include George Ezra, Tom Odell, Izzy Bizu, and the Cure drummer Jason Cooper. Royal Academy of Music. The oldest Conservatory in the United Kingdom, under the personal patronage of Her Majesty, will celebrate its bicentenary in 2022. The list of graduates and alumni is no less impressive: among others, Annie Lennox from Eurythmics and Elton John studied here (for authenticity, a couple of scenes of “Rocketman” were filmed in the Royal Academy
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Studying abroad is a complex and expensive business: the cost of a year can vary from hundreds of thousands to one and a half million rubles per year. However, there are many grants and scholarships available, some of them covering up to 100% of the tuition costs. You can learn about the subtleties of preparing a portfolio for admission and receiving scholarships at the exhibition of British education “Study UK: Discover You”. We advise you on which educational institutions you should pay attention to.
BIMM (British & Irish Modern Music Institute)
The music industry in miniature .Britain’s most prestigious school of contemporary music. It teaches not only how to play a musical instrument well, but also how to interact with the industry. Among the directions — vocals, playing instruments, music business, production and songwriting (it is taught, for a moment, vocalist Lamb).
On the territory of the Institute there are several rehearsal bases and small studios: young musicians gather groups, record demos and organize concerts without leaving the walls of their native University, and student journalists publish LDN magazine, where they talk about their colleagues and interview masters from big show business. Senior colleagues (ranging from Chuck D to Brian may) also visit students, telling them about the intricacies of their work and leaving Souvenirs: in one of the halls, for example, you can admire an autographed Niall Rogers guitar. In General, there is a whole model of the music industry-and the model is quite working. As a result, bimm alumni include George Ezra, Tom Odell, Izzy Bizu, and the Cure drummer Jason Cooper. Royal Academy of Music. The oldest Conservatory in the United Kingdom, under the personal patronage of Her Majesty, will celebrate its bicentenary in 2022. The list of graduates and alumni is no less impressive: among others, Annie Lennox from Eurythmics and Elton John studied here (for authenticity, a couple of scenes of “Rocketman” were filmed in the Royal Academy
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What Red Bull Music Academy was for musicians and why we will miss it
What is the RBMA?
International music residency for artists, producers and DJs, which was sponsored by Red Bull, and the musical and organizational part was handled by yadastar from Cologne. A creative residence is something similar to a children’s camp for adults: participants gather in one place, live together, engage in creativity and make joint projects.
In addition to the creative residency, RBMA is also a huge archive of video lectures from well-known producers, sound engineers and musicians: all these lectures were held live during the residency.RBMA started working in 1998 in Berlin. At that time, the tumultuous nineties and euphoria that came after the fall of the Berlin wall were already fading, and people who came to Berlin for inspiration either left or lost their enthusiasm.
“We were 23 years old,” says Torsten Schmidt and Mani ameri, the founders of Yadastar, which founded the residency in collaboration with Red Bull, ” and we really missed the opportunity to learn music: it was difficult to exchange experiences, all like — minded people seemed to be scattered and confused all over the world, pathetic sound engineering courses and music colleges did not provide a single gram of valuable or even relevant information. When Red Bull asked what kind of project they could do with us in the music field, the idea was obvious — it would be cool to bring together musicians of different styles and cultures and give them the opportunity to learn from each other.”
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Learn several foreign languages
It’s nice to come to Italy and say “Buongiorno!” passing waiter. And then catch the admiring glances of those with whom you came. Is not it? But it has long been known that learning foreign languages contributes to the development of a good memory. It’s also very interesting! So why not take advantage of this?
These are effective methods for training memory. But there is also something interesting. Memory is inextricably linked to proper and good brain function. This means that stimulating its work allows you to improve memory:
It has been proven that regular sports activities increase brain activity and improve memory;
No to gray days! It is well remembered that that does not fit into the framework of everyday life. Try to change the environment, add bright colors, go to the store on a new path … It is not necessary to radically change your life. Just add something new to your daily routine, and your brain will work with renewed vigor;
Add new habits. For example, tidying up your desk in the morning is a great start to a productive day!
Meditation, relaxation make the brain switch, relax. This means that he will perform new tasks with renewed vigor;
Music has a magical effect on our brain. It has been proven that people who practice music have better memory and analytical skills;
Teamwork. Brainstorms have proven their effectiveness more than once. And now scientists have proven that the decisions made in the team were more accurate and faster. They attribute this to the fact that information is easier to perceive and assimilate during communication. Therefore, solve problems together!
The brain assimilates and sorts information while we sleep. So don’t ignore this process.
Conclusion
This is just a small part of the effective techniques for developing memory. But simple reading will not work. Apply these techniques. Remember, only 50% of the result depends on the doctor, and the remaining 50% on the patient. Without working on yourself, you will never reach the top.
Figure 1. Sample structure of coursework
The above structure can only serve as a guide. When giving the assignment to write a term paper, the teacher usually shows a sample of drawing up a plan, explains which sections should be contained in it.
How to write the introduction of a term paper correctly
The introduction is what is always read. If the main part of the commission (and even the leader, if he is not very conscientious) can skim through, then the first pages of the text will certainly receive close attention. As the title implies, this section serves to introduce readers to the course of the matter, to briefly describe the research. The introduction consists of typical parts:
Relevance of the topic. You need to explain why you chose this particular topic, why it should be considered. The arguments presented depend significantly on the direction of the research – it can be either the novelty of the topic (“in connection with active changes in this area”), or its controversial nature (when one large scientific school expresses one opinion, and another – another), or practical significance. For historical topics, it is necessary to establish a connection with the present, to trace what the events of the past are affecting now, to draw parallels.
Objective. A goal is what you want to achieve as a result of your research. For undergraduate coursework, the goal may be to “learn” something, or “systematize knowledge” about something. In senior years, the work is more practical in nature, and the goals change – “to formulate recommendations for improvement”, “to develop a project”, “to identify ways to improve efficiency.”
Work tasks are a kind of “steps” to achieve the goal. If the goal of the work is one, then there are several tasks. Their number should correspond to the number of paragraphs in the work plan. Each item in the table of contents is a separate task.
Dated using verbs – “analyze”, “consider”, “characterize”, “describe”, “classify”, “reveal” and others.
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