Помогите человеку

[Kapitula]

если тебя не интересует, зачем пришел в тему.
тому инвалиду уже собрали на кресло. в штаты ему визу не дали, поэтому поехал по европе.

[nyccard]

если тебя не интересует, зачем пришел в тему.
тому инвалиду уже собрали на кресло. в штаты ему визу не дали, поэтому поехал по европе.

А почему по Европе?По Белорусии облом?

[Kapitula]

Белорусь объехал, а почему нет?
Он строит рехаб центр, учится у специалистов в европе

[Quanty]

Ну , больные и нуждающиеся есть везде.И в Америке тоже кстати.Возможно и рядом с тобой.

и чё?

[Kapitula]

я тебе честно скажу, ни с чем, кроме паыпела даже заморачиваться не хочу
...с покупкой на сайте ничего не получились? хороший вариант

Кстати, Дова, теперь у нас есть пэйпал

[Kapitula]

http://news.tut.by/society/503883.html
Мечта сбылась- девочка поехала в диснейленд

[Kapitula]

http://lady.tut.by/news/life/513595.html

[Kapitula]

Who we are?

Social Charitable Public Association "Genome" is an association of parents raising children with rare genetic neuromuscular diseases (NMD). Many of those people whom we asked for help replied that our children are "unpromising", which means there is no sense in investing money in them. But we didn't give up. We united. We united to defend the life and health of our children with our lives. The children who turned out to be useless for everyone, except their parents. We raise the children with rare genetic diseases like spinal muscular amyotrophy (SMA), Duchenne myotrophy and other. These diseases damage movement functions of the children, cause heart dysfunction and labored breathing. Our children have normal intellect, often even higher than usual. Life time is up to 20 years, depending on the kind and type of the disease. But one way or another, the deadly nature of the disease means that child's muscles lose their functions - gradually all over the body. This process lasts for several years and leads only to one and unavoidable result.

Why us?

Many of the fosterling-children of "Genome" with NMD require constant artificial lung ventilation and need special care and large financial resources. The rest of the children are either wheelchair users or belong to the families without necessary resources required to pay for rehabilitation medical services due to difficult circumstances. In Belarus there is no special-purpose state program aimed at the support of the children with NMD. Short lifetime of the children is the main reason why we are denied support from the charity funds. Their concepts do not include helping the "unpromising" children. At the same time the children's lifetime is not short enough to make them fosterlings of the Hospice. Anyway all problems related with severely ill children turn out to be the burden of their parents only. About 40% of "Genome" families have many children and half of them have only one supporter, which makes the difficult financial conditions even worse, that's why "our" mothers carry the heavy burden of supporting the life of their families. Most of these women live on benefits that are enough only for primary payments. They have no money to buy clothes, personal hygiene product, medical drugs, consumables for artificial lung ventilators, good quality orthopedic devices and other products. Child's disease and the necessity to stay beside him all the time limit the possibility of professional growth and self-development of the parents. This real-world situation leads to gradual and stable emotional and physical burnout which is extremely undesirable for both - parents and their closest persons.

What are we?

Since 2013 our Association provided financial, humanitarian, psychological, legal and rehabilitation assistance to more than 300 recipients.

All work of "Genome" is based on voluntary activities and requires substantial financial, physical and psychological investments.

During the whole period of work of SCPA "Genome" the recurrent costs were paid at the expense of the parents: space lease, utility costs, fuel, and means of communication, publication of media materials, hosting, state taxes and other payments. Unfortunately, the specific nature of children's disease imposes limitations on the possibility of fund raising for normal life sustaining of the children. During these three years we burned out and got tired. That is why we decided to support the working apparatus, hire employees which will allow us to systemize the work of "Genome" and provide a stable support for "our" children and parents.

The global task of "Genome" is drawing the attention of the society to the problems of people with neuromuscular diseases and searching for the solutions of these problems.

What do we do?

— buy personal hygiene products, special nutrition, consumables for artificial lung ventilators, and means of rehabilitation;
— provide financial and humanitarian support to the low-income families, including shoes, clothes, cleaning products, stationary materials, food stuffs;
— pay for health-improving rehabilitation in medical centers;
— pay for onsite training courses of special anticontracture massage;
— pay for swimming pools with suitable technical characteristics (barrier-free environment, elevator, comfortable water temperature, modern filters);
— organize celebrations at the place of living of the children;
— organize the visitation of vergers;
— initiate the parent's participation in study groups for extension of knowledge about how to take care of disabled children requiring wheelchairs and children with artificial lung ventilators;
— organize going out to workshops with participation of foreign subject matter experts;
— 2 times per month we organize roundtable discussions among parents to discuss the vital problems;
— provide psychological assistance as well as professional trustworthy information on proper rehabilitation support of children with NMD.
— run campaigns to gather humanitarian aid for member-families of SCPA "Genome";
— organize health-improving recreation for member-families of SCPA "Genome";
— organize "Ecological workshops" for member-families of SCPA "Genome";
— actively cooperate with mass media (we hope to draw the attention of the state to the problem);
— gather preliminary list of patients with neuromuscular diseases in the Republic of Belarus.

In the future the database of people with neuromuscular diseases being created for our country should become a part of patient's uniform registry in Europe.

And these "activities" become possible only due to single donations either from companies or from private investors, that's why there is no recurrence in assistance as such.

"Genome" Association was founded by Anna Gerina, a mother of a girl with SMA, and it is the only organization in Belarus performing this kind of work.

Development of "Genome" infrastructure will become a guarantee for effective help for the fosterlings of the Association. For many years we've been occasionally helping our disabled children and their parents, and we come to an understanding that until we build a distinct working system we only gather resources for one child and then we get another child in his place, and another and so on, but the number of trained specialists and doctors, informed administrators and tolerant people doesn't increase. While the number of children is growing and it becomes harder to aggregate the resources. And we need personnel to build the necessary system.

What do we need the money for?

SCPA "Genome" is gathering money for payment for work of a community worker, secretary, accountant, project manager, payment for means of communication, Internet, office lease, utilities. As well as for office furniture and equipment.

We will be happy to find a corporate sponsor for the project.

Annual sum of money: 47,700 rubles


Facts and figures about "Genome":

— 63 children with SMA and other rare incurable genetic diseases (all of them impairing movement functions of the child, cause cardiac dysfunction, labored breathing; children have normal intellect with average lifetime of 5-20 years);

— more than 300 people from "Genome" families receive different kinds of direct help.

You can support "Genome":

1. Through Talaka.by platform by choosing the sum of the support;

2. Through Unified Payment Information Space ("Payment" system (UPIS)) - Financial services - Electronic money - Replenishment of digital wallet -

- Replenishment of digital wallet belgi - Wallet number: 30121434;

3. By transferring a donation to the payment account PIN 194903561 a/c 3015000006187 in the branch No. 510 of OAO "ASB Belarusbank" code 603; indicate the purpose of payment 'to support the organization".

4. Corporate card number: No. 9112 0008 7167 5050 due date: 09/2017

[Kapitula]

сделала пэйпал, так что если кому легче через него...

[Kapitula]

Коллега из семь лет назад законченной резидентуры 500$ дал. И друзьями особыми не были, и не общаемся. Какие люди милые бывают