Ekaterina Shergova: To every child who had cancer, received treatment

600 million roubles is much or little, what was it like to be a leader, why do you have to avoid fun watching kids, what to teach donors to help the project, not the “Mashenka” and be proud of the fond giant, says the Director of the Foundation “give life” Ekaterina Shergova.

Ekaterina Shergova. Photo: Anna Danilova

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– During your work in the Fund what history has greatly influenced you?

At the beginning of my journalistic journey in 97-m to year when I worked in the program “Browser” on the channel TV-6, I did a story about the first tightening in the area of adoption. We went to the orphanage. One of the shots with us was our Director, a big fat guy with a beard, and I saw children four or five years surrounded him and wouldn’t let go. It was just unbearably painful to watch. With an effort of will I worked, just turning off all emotions, and left.

So, if you’re talking about the history of the children, I try not to pass them through themselves as pretty good yourself you know. I understand that such a job is extremely difficult, so just don’t get to know the child in the treatment process. I don’t know if this is correct or not.

But, of course, follow the stories of our subjects: employees know what is happening, where what problem, who needs what, what news do children in hospitals.

– It has always been? Why?

Always. It was my principled position from the beginning. I just decided that I can’t. I decided, I knew that I would be hard.

Then with volunteers of the movement “Murzik” we have done a project for the 3rd channel – it was already the beginning of the 2000s and I once or twice went with them to the orphanages. It was a charity event to collect items for orphanages, and the channel called on people to participate.

From Herman Pyatov was the concept that things should not get in the Moscow house because there is just domestic issues are solved, and away, and we went to Yaroslavl, Ivanovo region, Kostroma. I remember that it was some kind of monstrous poverty and ruin. Of the four toilets three a long time are broken, just a hole in the floor.

This of course, I was very impressed, but then I tried to concentrate on what they can do and how you can help, not on the emotions that you experience watching these kids. Maybe someone thinks that this callousness, but I think I just have such a defensive reaction.

I know our survivors. Two years ago, when the Fund turns 10 years old, we decided it was time to tell the stories of successful recovery. We found those who have helped and who have recovered – that I know them, with them, I actively communicate.

– Usually first man is thrown somewhere into the breach, then he is very bad, then it burns out.

– I’m a completely different person, very systematic and deeply organized. When I say, “we Got horror, we got a problem!”, I approach this as: “Well, my, well, problem, but we now analyze and decide how we will solve it”.

I’m not forced to charity

– How in your life has a Foundation “give life”?

In the early 2000’s I was leading to the 3rd channel in the program of the Moscow news, which was called “the City.” It was a big news program, it was multi-genre, and, of course, there were social issues. Charity then on TV there was almost none. As a channel we understand that we have some mission, although these words were never used.

I dragged his colleagues in a variety of charitable endeavours, and, to their credit, they took part with gusto and worked with great dedication. First we did a project to help the orphanages, assisting the doctor and the coordinator of the orphan care team Herman Pyatov.

– And you at that time know where you need charitable assistance?

– On the Internet. Was already “Live journal”. I told my colleagues: “Look, this is a resource that can help us to find new subjects.” In the “Live journal” I met Katya Chistyakova, I offered her their assistance in the implementation of the idea of development of voluntary donorship.

Then in “the Paper.ru” has published the famous article by Valery Panyushkin “AB negative” he was looking for donors for girl Nadya with a rare blood group, right before the New year. The article, of course, impressed me and we are on the 3rd channel organized a charity blood drive with the artists.

And it was not yet associated with Chulpan Khamatova, nor with Dina Korzun, with them I met much later. I work dealt with many artists Igor Petrenko, Gosha Kutsenko, Grigory Antipenko, Igor Zolotovitsky, I said, “Let’s go to the Department of blood transfusion”. So he published a series of stories about the donation. Then Igor zolotovitski offered assistance: “Listen, I have students, maybe they’ll do something for children in the hospital?”

And students of school-Studio of the Moscow art theatre organized a “tree” in the Department of Oncology, the children had an utter delight. Among the students was Jan Sexta and Maxim Matveev. They are now very famous artists, and new year’s performances for children in hospitals so far.

Photo: grant life Fund / Facebook

They are all lit up, so there was a “Doctor Clown”.

But then none of us had any specific goals, ideas, what it could lead. I continued to help, I realized that the donation is always a problem, especially during the holiday season and summer. The next summer I got sucked into the movement for the development of voluntary donorship is not only a TV station where he worked, but the radio station “city-FM”.

– You donate blood?

– She passed, and pass, Yes. Can’t say that megaregulator, but a few times a year. I even took the granulocytes. This is for a very advanced and responsible donors. First, you go to a doctor; if it’s all right, come again in the evening, you inject some drug that makes these granulocytes to work better, and the next morning you arrive and pass. Complicated procedure, not everyone is ready and can this much time to spend. But I wanted to check it out for yourself.

I participated in the first action typing of bone marrow donors. Just then there was a benefactor who Karelian registry of bone marrow donors gave the money for it. The action was carried out in the “contemporary”. Then he repeated the same action in the Russian children’s clinical hospital. And we are on the 3rd channel everything is very actively covered.

Always colleagues responded to your call? Never said, “without me, please?”

– No. First, I’m not “forced charity”. The third channel was small, the wages of the people were not that large and this was our contribution. We put our professional skills. Sometimes one of the journalists said: “I will not go on the shoot”. “OK, don’t go.” The other guy’s name, you never know why a person refuses.

After this action by typing then all hell broke loose: I helped at charity concerts which were organized by Chulpan and Dina in the “contemporary”. Then two volunteer groups (Dina and Chulpan artists and doctors) began to merge. When the decision was made to make a Foundation, I didn’t know about it. Remember that at the end of the summer of 2006 I was called Katya Chistyakova and said, “We want to offer you to log in to the Board of Trustees”. For me it was a honor and responsibility in one person. And what this will evolve and what will, of course, I did not imagine.

Very much in our lives, and mine in particular happened thanks to the people with uncommon names Galya (Galya and Novichkova Galina Chalikova), Kate and thanks to the people with rare names Dina and Chulpan.

Ekaterina Chistyakova, Dina Korzun, Katerina Gordeeva. Photo: podari-zhizn.ru

– How did you meet Galey Chalikovas?

– I think there was some official experience, are all familiar on the go. I arrived at a small auction, which was done in some basement cafe somewhere on Tverskaya, and Gal immediately said, “Oh, great! I have urgent business with you: have one child…” And so in my life appeared Galina Chalikova.

I remember once I told her that they are going to go to “IKEA”, she said, “Well, can I come?” I said, “Galya, darling, of course, go together.” I picked up Galya, she said, “but we need to stop on the way”. We visited the Russian scientific center of roentgenology and radiology, I was there for about forty minutes, waited for her, someone that it was necessary immediately to give, and that was very important.

Then we went to IKEA, bought a bunch of stuff, I’m the sort of nonsense we had, and Gali was a huge list. When we have this uploaded, I realized that all this Gal bought not imagine, and someone, she has “IKEA” did not need anything. Then I not so well knew it, and so it screwed me up so much: it’s one thing when a person goes and buys something and brings others, because he was on the way, but another thing when your only day off you’re going shopping for strangers. She, of course, all the way answered the phone, about something someone asked for, it asked me all the time. I can say without any pathos that is perhaps one of the most important for me Dating in my life.

They often say that true friends are those who know from childhood. I don’t know other way, and I have a huge number of friends I have acquired about 30, thanks to the Foundation.

Galina Chalikova. Photo: podari-zhizn.ru

– When I read Katya Chistyakova learn those times, they betrayed a despair. All who could, have already had a blood test, and still its not enough, still not enough. Many problems had since been resolved, mainly thanks to the “gift of life”. The issue of organ donation now so not worth it?

– Seasonal problem as was and remained. But the hospital began to work differently, there are more branches of blood transfusion, which work like human beings. It is extremely important which in the transfusion Department of the environment – are you comfortable in the closet, do navigation, is delicious if you pour the tea while you sit and wait, warm you in the chair? Not does it irritate you that a film that specifically put to the donors? It is very important the normal human attitude.

The man who came to give his blood and probably take time off from work or spend your personal time, it is very important to him was the normal attitude. Not all hospitals, it was, now very much changed.

Finally, the donor is entitled to a holiday. In our country, as many as two – national and international donor days – April 20 and June 14. Accordingly, the party should be gifts and everything else. Besides the usual small gifts that the Foundation “give life” to donors for making the holidays, we came up with gifts to honor donors, because it is also extremely important. In addition, making gifts to those who first gives blood who are 18 years old.

“They are 30 million collected, enough”

You for six years worked as public relations Director of the Fund “give life”. What achievements are you proud of?

– I am proud of the projects with the channels through which we collect donations for the treatment of children. We can now indefinitely blame the media for any coverage, but personally I am very much willing to forgive, because the 5th channel is the “Day of good deeds”.

The first our stories began to be published regularly on NTV. TVC is also with great joy joined in to help. Media executives realize that their air time can be spent on specific benefits to specific people, and happy to help.

When I suggested to the chief information officer of the Fifth channel to Alexander Anuchkin to try to do a story on our ward Anzor Gireiev to collect his money for the treatment, Sasha agreed, sent a film crew to the Anzor to Ingushetia. And the required amount, even more, gathered in just one day. Then we thought that these stories should come out regularly.

Alexander went to Alexey Brodsky, who was then the head of the channel, and he also immediately agreed. And after some time, they themselves invented and initiated the charity project “good deeds Day” when every Thursday, viewers of the Fifth ward to help different foundations. Now the channel guide has changed, but I know that this project for them is still very important and loved.

Through these three channels the Fund, for example, last year attracted about 600 million rubles. Think this is a huge amount. But really, and this is evident if you carefully examine all of our records, that only about 30 percent of all of our spending!

Many people say to us – here they are twice a month on channel five to 30 million collected, enough. Of course, it’s a big help. But with the volume of requests for help that we have is still very little. So we always continue to look for partners among the media.

– A First channel, channel “Russia”?

“Russia” has its own policy, and the First channel works with the “Rusfond”. We do with the First any more image information history. For example, in 2010, the First were shown to our charity concert “the Little Prince”, and on November 26, 2016 – the anniversary concert of the Foundation. When we gathered in a television Studio all those with whom began the Fund – the children whom we helped 10 years ago.

So we made the project “the Calendar Fund.” Every month and the winning photo cancer. This absolutely stunning young men, each more beautiful than the other. At first we even internally, we had no idea of how this project can be claimed. But it turned out that people wanted those stories to know it was this important.

This year we started a separate project, it’s called “Native blood.” There you can see the way our recovered children who have been through a bone marrow transplant.

And yet, for example, two of our heroine, who had long recovered and moved to different cities, found each other through our project. Of course, they phoned: adult young women both cried into the phone. Once they were roommates in the ward, and both were in full confidence that the other is already gone.

We also made a website where you can find answers to all questions about bone marrow transplantation, there are also the stories of those who need help now to find an unrelated donor or for cleaning of the transplant.

“And we want to donate specifically Goldilocks”

– What are the primary tasks you see before you as the Director of Fund giant?

By and large, we have just the size is different, and the problems we all have, I think, the same.

Our task consists in the fact that in our country every child who got cancer have received necessary treatment and non-medical help, so we just can’t afford to fall off. We would like to continue to solve these problems systematically and will try to do it. No revolutionary changes in the life of the Fund is not expected.

– And what would you like to do?

– We have several large expensive projects, I would like to implement them. I hope that nothing will happen, and we don’t have to give them up. The Fund is not only about how to earn and wisely spend; the Fund is still about changing the “landscape.”

– What you change in the “landscape”?

The Fund has put forward a huge number of legislative initiatives, not all were able to quickly implement, but there is something we are proud of. For example, the fact that ordinary people can get a tax deduction on charitable donations is largely due to the Fund “give life”. The possibility of a long hospital for moms – it is also a credit to the Fund “give life”. Availability of pain relief is our joint achievement with the Fund “Faith.”

Now, finally, the state drew attention to the problem of the availability of bone marrow transplantation. This treatment, which we constantly and has many years of talking, still normally not calculated, and exists largely thanks to the charity funds.

Happen, in my opinion, simply tectonic shifts: I, along with Chistyakova was on the Board, the Chairman of the government of the Russian Federation on social policy Tatyana Golikova, which discussed this problem, and was amazed how seriously are willing to do and Tatiana, and the Ministry of health – all finally realized that it was about time.

Bone marrow transplantation in Yekaterinburg until recently was available only to children of the Sverdlovsk region, but thanks to the Fund “give life” she two years ago became available, and children from the neighboring regions. For example, the child from Chelyabinsk is not necessary to go to Moscow, where yet the fact that there are places, but rather to go to Ekaterinburg in the CSTO No. 1, where he’ll have the transplant.

This was largely covered by the quota, but what is lacking is covered by the Fund “give life”, we helped the hospital, we have updated equipment. We appealed to the local Ministry of health, said they are willing to help, told how important this is you need, we have undertaken training of doctors (doctors from Yekaterinburg come to the center of Dmitry Rogachev, the Foundation is funding their training).

The same project we are currently working with for now. We would very much like to make this happen, and we are looking forward to it.

– When you help children? When not enough money quota?

– We know from the beginning that is not covered by the quota. We know that no quota will not cover the needs, for example, in unregistered medicines.

Fund “gift of life” buys unregistered medicine?

Yes. This assistance we are able to call the address, in fact it is not targeted. We believe this design help because this problem is systemic.

But the address help you have, opening your website, we can see fees for specific children.

– Yes, we collect money through the stories of specific children, including on our website. Different doesn’t work in Russia. But every child “gathers” not myself personally, but for the whole project.

For example, the Center of Rogachev knows that they have a certain number of children in need of adcetris. Of course, we talk about a child that needs to adcetris, but if you read the article until the end, you’ll find that we offer the sacrifice of not specifically on this child, and for the project “Anticancer therapy”.

Because children who need adcetris, of course, much more than we can tell on our website.

However, you can, if you want to write that transfer money to this particular child, but generally we recommend to donate to the project.

By the way, about the same situation in America.

A few years ago we went to Memphis, in the best cancer hospital St Jude Hospital. And the hotel at the reception I saw Wobbler (stupid name), this little thing, into which is inserted a piece of paper. It was a leaflet from St Jude Hospital with a photo of the child – “take the biscuits, put the money.” When I asked the Foundation about this, they said, “Yes, of course, as without you baby the money?” We Americans are very different laws: under their laws, you, the benefactor, have no right to insist that your money went only conditional Masha, and no one else.

Under our laws otherwise. You can donate specifically to Masha, and then Masha will get your money.

But if many do so and will be collected over the amount needed, we without the permission of the benefactors will not be able to transfer the money to another child, and they’re just dead weight hangs we have in the account. Therefore, our accounting Department will contact you and ask, “Your money Masha is no longer needed, she has already collected the medicine. We are ready to give you the money back, but you can spend it on Ivan, can you?” To avoid such situations, it is more convenient to donate to the project, not the address.

– Our Foundation has had several cases where people didn’t want to even contact the Foundation and request a room ID card of the recipient. We’ve explained and cited a list of reasons why not, and was surprised that in 2018 is still necessary to write such a detailed explanation.

Is including the Foundation’s work: to write, to explain, even if you have a blister on your tongue, you still need to do it. Because there are people who yesterday for the first time learned about the charity. If we want in humans, this impulse was not single, he should go and explain.

Photo: podari-zhizn.ru

We also had a case where a person was adamant: I want to help this child, but if you card number is not given, then how? Child, in my opinion, the charge was treated in the Burdenko hospital. He said, “You can pay the bill at the cashier of the hospital.” And people came with their feet to the clinic, paid and was happy. I don’t know whether he will continue to do charity work, but he wanted to do a good deed this way, and he made it.

– Why is equipment for clinics, which you including pay, is not under the state programs?

– Not all fit into the framework of state programs. For example, when the Center of Rogachev was built, the estimates were laid particular equipment. It was built a long time, some things during this time obsolete, and nothing is impossible to state with such speed. And before the opening of the Center of Rogachev, we had a special project Fund we need to raise 400 million rubles for the equipment. This huge amount of money was the most important task.

As with unregistered medicines in the West there are new effective drugs, then they have to go through very long procedure of registration. And our doctors, of course, want to treat children with modern drugs, which cause fewer complications and more effective. Again increases the load on the Foundation.

Because if the drug is not registered in the country, due to quotas, it is in principle impossible to obtain. Now say that the registration process should be accelerated and that, in my opinion, correctly.

Although, for example, the newest drug for refractory lymphomas “Adcetris” registered in Russia. But we still buy it. Because clinics simply do not have enough money for such expensive drugs.

We also have the project “Ambulatory of the apartment,” when we paid rent of flats where children and parents can live near the hospital. Because Federal hospitals do not have enough inpatient beds. Those tests allow for a break between courses of chemistry are discharged and asked to come to the hospital for procedures and examinations in the outpatient setting. But patients mostly not Muscovites, they need somewhere to live. And these costs are also borne by the Fund, because the parents of the regions, of course, no money to rent an apartment in Moscow.

When running out of quota treatment, we are trying to close something that can’t handle the state. For example, in the Center of Rogachev every year, around September, the end of quotas on implants. And implants make it possible to amputate the leg or arm of children with sarcomas, and replace the affected bone with implants.

The hardest part is my explosive nature

– Tell us about personnel changes in the management team of the Fund “give life” this year – he left at the same time Ekaterina Chistyakova and Gregory Mazmanian.

– Coincided, as it happens, although I don’t like coincidences. Grisha from the very beginning, ten years ago, warned that comes in the Fund are not forever. He was going to leave early, seven years ago, but ill Galina Chalikova, and he left. It was a very inopportune moment, because the Gal had a great reputation, and when she died, we felt an absolute orphanhood. Grisha had to put aside his dreams, and he stayed with us.

And this winter he received an offer he’s been waiting for your whole life and Grisha decided to leave. He came back to the WWF to spearhead a programme to restore the population of one species of tigers. And Katia Chistyakova went to study in America, too, had long dreamed of.

When Katya and Grisha all explained the reasons for his departure, we thought about the new Director. The staff are very experienced, and it was very important that the new Director was the person who works within the Fund. It became my main argument.

– Now it is difficult?

– I – very.

– What is the most difficult, what difficulties?

– First, you need a lot of new skills, which I in my previous post here was not needed. For example, I have now read a lot of documents. Other than that… I still was a PR Director, so naturally, I knew about the activities of each program of every Department and every employee. So I didn’t need anybody to know: “who are You, what are you doing?”

Of course, there is the uncertainty, not that “I see the goal, go to her, not noticing the obstacles,” no, nothing like that. But Katya and Grisha really close and always support me with advice.

The hardest part is my explosive nature, but I quickly learned not to explode.

Adults, too, need help

– What are your long-term big challenges you see before you?

– First of all, the project availability of bone marrow transplantation in the regions. A year need to spend 800 bone marrow transplants to children, and is exactly half, because there are no clinics where people know how to do transplants, where there is the necessary equipment which would be properly equipped boxes.

Doctors from the Federal ready to teach doctors in the regions, to share his experience. We also support the draft when doctors from regions in the Center of Rogachev to seek a “second opinion” or to send a swab to the lab for diagnosis.

It would have been impossible if not for the doctors at the Center of Rogachev. If not for these people, familiarity with which is also in my list of the greatest successes in life, then none of this would have happened.

Ekaterina Shergova

I came face to face with the Center of Rogachev, and always the same – send of a man and realize that everything then will be fine: people will like it, embrace and begin to work with him.

– There are some things to which we have become accustomed and consider them as normal. And when they are not in other places, it’s absolutely unsettling. I with Ekaterina Chistyakova was in the same hospital and with the doctors, we walked through the wards. And then Kate said: “They never knocked on the door and asked patients whether you can enter.”

Really, it’s horrible warps. No matter what you’re a doctor, and this is your hospital – the patient is a man, he must have some personal space, you still have to knock to apologise.

– Do you understanding the need to invest in science from the Russian donors?

– Yes, of course. But most of these are large benefactors or company to whom it is important to help the prospect to see the system changes, thanks to its assistance.

If in the same America spending funds on research are very large, of course, we can’t afford it.

But, for example, the Center name is Rogacheva Fund “Doctors, innovation, science – to children”, they are just working to attract donations for the work of the scientific sector of the clinic. And in the clinic conducted a serious scientific study. They are, for example, in the course of his research came to the conclusion that in very rare cases you need to look for an unrelated donor of bone marrow. And, even if the relative is suitable only halfway, it’s better to do related transplantation, but to conduct the procedure of cleaning, separating unwanted cells, which can cause a dangerous reaction “transplant against host”. The Center also conducts its own research in the field of immunotherapy for cancer treatment.

Someone donates to help children in the here and now, someone invested in science, in the future, assistance was available to millions. I believe that our country is one without the other is not working.

– “Give life” helps children and young adults up to 25 years. You do not plan to expand to adults?

– No. We just can’t handle. We have so many still unreached in the field of pediatric Oncology. We decided early on that help children up to 18 years. Then the doctors said, “You know, studies show that those who 25 should be treated with children’s protocols.” So began the age of 25.

But I am very happy that there are funds to help adults as “Live”, “no Leukemia”. They do a very difficult, important work. And I hope that our society has almost matured to understand that adults also need help.

Photo: Anna Danilova

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