By this letter I’d like to express my gratitude to the “Podari. Life” supporters

By this letter I’d like to express my gratitude to the “Podari. Life” supporters

Thanks to all our donors Alexander Druy from National Research and Clinical Center for Pediatric Hematology participated at the 4th Pediatric Neuro-Oncology Basic and Translational Research Conference held in New York, NY. Here is Alexander's letter with the explanation why such participation is important for the future of childhood cancer treatment in Russia.

By this letter I’d like to express my gratitude to the “Podari. Life” donors for the support of my participation in the 4th Pediatric Neuro-Oncology Basic and Translational Research Conference held in New York, NY. This conference was conducted by the Society for NeuroOncology of the USA and Pediatric Brain Tumor Foundation.

The spectrum of the discussing topics was wide and included all aspects of the brain tumors in children: biology and molecular genetics of embryonic and glial tumors, comprehensive diagnostic and disease monitoring procedures as well as innovative therapeutic approaches. Embryonic brain tumors, such as medulloblastoma and atypical teratoid/rhabdoid tumor, enterprise the major research interest for us because two studies (clinical and translational) are now performing in our center. Findings in biological basis of these tumors reported in the presentations as well as fruitful discussions with foreign colleagues, led to new ideas how current research and diagnostic procedures could be improved by the introduction of revealed molecular markers.

We sure that increasing of diagnostic accuracy will result in the benefit for patient’s survival because of precise risk-adapted treatment conduction, reducing therapeutic intensity for prevention of late adverse events in low risk patients and intensification of the multimodal treatment for high-risk patients.

Problems and perspectives of precise and targeted therapy were raised in the Translational Therapeutics session. Several new substances were presented to be active against different kinds of brain tumors in preclinical studies.

These drugs could be salvage for those patients who do not respond to the standard chemotherapy or who do not have reserve for the treatment intensification.

High grade gliomas, the most aggressive brain tumors, are still a challenge for oncologists and researchers all over the world. There are not curative treatment options for this deadly disease. But past few years resulted in significant benefit in the understanding of biological basis of these tumors. We are looking forward to start performing comprehensive genetic testing for these patients in our Center. And all professional society hopes that the achievements in molecular biology will transform into finding of the key for successful treatment of such patients.

After the Conference the collaborative meeting of the Children’s Brain Tumor Tissue Consortium was conducted by Children’s Hospital of Philadelphia.  During this meeting perspectives of collaboration between our Center and Consortium were discussed. The Consortium was represent by the leaders in clinical and translational research of brain tumors in US Adam Resnick (Philadelphia, PA) and Javad Nazarian (Washington, DC). After the fruitful discussion the directions of mutual research progress were outlined.

In conclusion it is necessary to state that participation in the Conference and subsequent research meeting was extremely useful and new ideas are now incarnating to the life in our Center.

We sure that this progress will result in significant benefit for children very soon and we see such examples right now.

The attendance of the conference was impossible without valuable support of “Podari. Life”. I sincerely appreciate all the donors of the "Podari.Life" public charity.

Alexander Druy, MD, PhD

National Research and Clinical Center for Pediatric Hematology, Oncology and Immunology

Lab of cytogenetics and molecular genetics

I didn't expect how good this Federal Hospital really is!

I didn't expect how good this Federal Hospital really is!

Anton Gillespie was a junior student at Harvard University when he's realized that he's dreaming about becoming a doctor. Before entering the forth year he's decided to volunteer in Russia. Podari Zhizn and Podari Life helped him to get an internship at Federal Center for Pediatric Onco-Hematology.  

The initial thought was - I want to become a doctor, not necessarily an oncologist. But it's important for me to get an experience shadowing a doctor. To see how they interact with patients.
I came to Moscow at the end of June and since than I was with Sergei - he works with patients recovering from stem cell transplants and they have pretty strict sterile conditions.
I have not had any official medical training yet because in the US you get the academic training first. So I cannot participate in medical manipulations. So what we do is we go see a patient - the doctors sometimes let me listen to the lungs and explain for example that when you listen lower and don't hear anything, that means there is fluid.... all those little details.
The language barrier is not a problem because the doctors speak English and as for me - I have always been interested in learning Russian as my family is originally from Russia and I have this heritage. I'll start applying to medical schools at the beginning of next June so now is my time to settle with my interests.

 

Everybody talks about - when you have free health care, clinics are really bad and you better get to a private clinic. So I didn't expect how good this federal hospital really is. The quality of care, the attention to children, the volunteers and the quality of life are amazing. It totally blew my expectations.

When I first reached out to Podari Life - I thought whatever I'd do is great. And now I see daily work of a doctor, I spend 6 hours a day there. So I get a pretty good sense of what they are doing. How they communicate with parents and what the parents have to do and go through. I see all the paper work the doctors do. In America everything is more computerized.
I shad doctors in the USA, but never shad doctors while they are seing patients in a hospital - never had this "field practice".
As for the difference that I see right now - I think the doctors definitely give more personal attention here. Here the doctor's office is literally next door to the patient.
I'll be in Moscow till the end of July and I will also practice as a volunteer - I start that tomorrow and I am very excited.
I also plan to see the apheresis - when the donors donate stem cells. I've signed up for the bone marrow registry myself by the way - so I'll see how they separate blood components and I will shad in the operation hall.

It's hard to say right now what I want to concentrate on in the future. I shadowed in so many branches and that's how it works, you come to medical school interested in one thing. But then you start shadowing and understanding how it all works and that's when you make up your mind. I think oncology is very interesting, but also the pressure here is really high. For example some of the patients have very poor immune system and if they have fever you have to think really quick — their lives depend on it.

But you also help people survive - literally. And that is very inspiring. 

We are super-proud that the hospital we support impressed Anton so much. It is our goal to help Russian children get the best medical care available, and help doctors exchange experience and get access to the latest research.

We thank all of our donors for their help. 

Galya Bolshova

Galya Bolshova

"When I get better, I’ll…” and then whatever—get married, have children, study at university, learn cross-stitching. You see, when you’re trying to deal with a severe illness, it’s very important to motivate yourself, otherwise you might just get stuck feeling depressed.

Anya Trishechkina: My illness gave me a chance to begin a different life

Anya Trishechkina: My illness gave me a chance to begin a different life

Anya Trishechkina, our heroine for May, spent a whole year in a hospital. Her treatment was tough, and she found herself in intensive care several times. It was almost impossible for her to always keep her spirits up. But she found support from her grandmother, who fought illness alongside her, and from volunteers and doctors. After her recovery, Anya’s life has changed completely, and she considers that a victory.

Sergey Svyatkin:  Illness Didn’t Have a Chance

Sergey Svyatkin: Illness Didn’t Have a Chance

Everyone who’s worked at the Podari Zhizn Foundation for a while remembers our star for April, Seryozha Svyatkin— not someone you could forget. Seryozha spent four years being treated at the Dmitry Rogachev Centre for Pediatric Hematology in Moscow, and another two in Saint Petersburg before that. Today, Seryozha is no longer running that marathon. Instead, he’s become an extreme sprinter.

 From "Podari Zhizn" ward to its employee. Zhenya Vaneyeva

From "Podari Zhizn" ward to its employee. Zhenya Vaneyeva

 It’s been nearly ten years since Zhenya first fell ill. Zhenya has graduated with a degree in Journalism, joined the staff of the Podari Zhizn Foundation, and conducted all the interviews for our anniversary calendar. Today, we share her story—her victories, her recollections… and her tears.

At 15, at the end of Year 8, I was hospitalized at the Kaluga Oblast Hospital with kidneys inflammation. I was suffering from major edema of the legs, the eyes, the arms… After three weeks of treatment, I wasn’t getting any better—it was, of course, not a kidney issue at all, but oncology. Cancer often masks itself beneath the symptoms of other diseases.

I kept getting worse, and then one day my mum saw an enormous lymph node on my neck, which the doctors decided to remove at once. After surgery, I got sent to intensive care. The doctors understood by then that they had no way of treating me, and so my parents started to look urgently for somewhere in Moscow that could. That’s how, one ambulance ride later, I ended up at the Russian Children’s Clinical Hospital, and found myself in the oncohematology ward. And I wasn’t scared anymore. I felt much worse back in Kaluga—I was getting treatment, but nothing helped. I just really wanted to know what was wrong with me and how one was supposed to deal with it. That’s why I’m very grateful to the doctor who immediately talked to me about it, honestly, forthrightly and in detail.

I learned that my illness was called Hodgkin’s lymphoma, that it was very dangerous, and that I was about to go through four to six blocks of chemotherapy, as well as radiation therapy.

The test results came and they were bad: I turned out to be on the fourth stage of the disease, not the third.  So I needed urgent hospitalization. But first they had to work on my kidneys that were in no shape to endure chemotherapy. For a few weeks, I just had to wait for the tests to come back better. Then one day the doctor in charge of me practically soared into the room, glowing with joy, saying that the indicators had finally gone up. That was when, filled with encouragement, we started chemotherapy.

 

My dad really helped me, because he told me from the start, “You just have to keep putting one foot in front of the other”, that the most important thing is to keep moving forwards, no matter how hard it is. It also helped that the ward, which I assumed would have to be quiet, peaceful and gloomy, was in reality filled with activity and life. Little bald kids raced through the corridors, older children chatted, reclining on the sofas… My ward-mate Madina, who’d been there for three months when I turned up, did her best to prepare me for everything. She explained what I’d experience when things got bad and when things were normal, and what I should fear. She told me a thousand stories, and made me laugh so much. I was very lucky to encounter so many people who knew more than I did. The first two months were grueling. I lost 20kg, going down to 38. I hardly walked and I spent a lot of time crying.

But one day I was leaving the ward in a wheelchair and realized that this was it—I’d finally reached my limit, the line that must not be crossed. I couldn’t get any weaker. I had to do something, to take up arms against the disease, to keep going with the treatment and to look out for the friends and loved ones who were watching all this.

At some point I began to walk, and go outside the ward, and I started to feel better. My test results began to improve, and they even started letting me spend time at home. It gave me new strength.

Everything was great, except that people’s reactions were unpredictable. I’d go down into the metro in a hat or headscarf, stick-thin, with a huge mask over my face and burning eyes… I must have looked like an alien. Some people stared in surprise, some had teary eyes, and some tried to help. There was a funny incident once where this woman caught up to us and offered something to my mum. She said she didn’t have anything, but she wanted to help us, so she gave us a rhinestone keychain for luck. It was very touching. But then, once a man came up and asked what I was being treated for—it wasn’t the plague, was it? That kind of mocking question hurt my mum more than it did me. I figured that people were simply scared, and protecting themselves in this incongruous fashion.

I generally tried to turn everything bad from when I was ill into something good. Or something remarkable, magical… One day I felt ill on the metro and they had to carry me on a stretcher. I imagined myself as an Oriental princess. And this is great, but it’s also normal! People generally tend to remember the good, whereas the bad gets smoothed over with time. I don’t remember—or don’t want to remember—the hospital as something terrible, as a place where children get treated or where they die. To me, it was a part of my life, and everything had a place in it: joy, sorrow, friendship, happy things, and misery. Just like ordinary life.

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Nothing in a person’s life passes without leaving a trace, and that goes double for a severe, debilitating illness. I have tears in my voice now, but these aren’t tears of fear or self-pity. This is a sign that, so many years later, the illness still makes me mentally and emotionally aware of the fragility and preciousness of human life, of time spent with the people one loves. It’s not like I spend every day talking to the people I know about my feelings from eight years ago. But sometimes, even if not very often, I think about these things in order to remind myself what it was all for.

Treatment finished eight months later. I went through six blocks of chemotherapy, then radiotherapy, and on the 30th of December they sent me home. I was overjoyed! I knew that my dad and my sister had prepared a surprise for me. They’d redecorated my room, changing all the furniture and painting the walls bright green, a very lively color. But more than anything I was happy that we were all together again. It was easier for my mum, since I was never out of her sight, but my dad came to us on Fridays, and then left on Sundays and spent the week living on his own. He was very anxious. He lost weight just as I did, and he had heart problems, so my mum and I had an agreement not to tell him if I was feeling worse, to protect him, he’s so wonderful.

After half a year of home schooling, I passed the Primary State Exam, and then came back to school in 2010. I graduated with top grades. But I didn’t know how my classmates would react to my reappearance. When I was being treated at the Russian Children’s Clinical Hospital, they came to visit me, but I was too embarrassed to come out and see them—I was very thin and looked awful. They spent a little time with my mum and went away again. For a long time, I didn’t write to them and didn’t get in touch, because I thought it wouldn’t be entirely fair. I had no idea what could happen to me, and I tried to keep people at arm’s length so as not to hurt anyone if things went wrong. I tried to focus on the treatment, on myself. But when I returned home, they came to see me, all 30 of them! We had tea, and they told me about life at school, and didn’t ask me any questions, and it felt really nice. It seemed like any day now things would go back to normal, to how they used to be. Before the illness I had a very active school life. I performed at concerts, as a drummer for a rock band. I went snowboarding! And I really wanted it all back.

For the first year, I had fairly harsh restrictions on my diet and my lifestyle, but later it was my mum who tried to limit me, and I fought back every way I could. I told her that I wasn’t disabled, and I wasn’t a hospital patient, and I couldn’t spend my whole life as a prisoner of my diagnosis. I got my dad to side with me too. But of course, I don’t blame my mum for anything! I understand full well what she had to go through. When you’re sick yourself, it’s not so tough, but when someone close to you is sick and you don’t know what to do or how to help, that’s far harder and more terrifying.

I really wanted to go back to my ordinary life, but it didn’t all go my way. In hospital, you see things very differently. You develop values you didn’t have before. That’s why at first I got very irritated when my girlfriends started talking about some idiotic problems with school or boys. How could you even call something like that a problem? I felt like an adult woman at 16, grown wise with experience, and it seemed like the girlish troubles and sorrows they could go through were forever beyond me. Like I was a completely different kind of person who knew what really mattered in life and what wasn’t worth worrying about. But a year passed, and I started talking about the very same things! And everything went back to how it should be. I think it was a sign that I’d recovered from the illness psychologically. I started to be concerned with things other than my health, and I started to think about not just how to get better, but what I should wear to the party tomorrow.

Illness can turn even a little child into an adult. I developed a different system of values, and the most important things in it are life, friends and family. I think I must have become stronger. But I don’t divide my life into two parts—before and after the illness. Life goes on, and the illness was a trial given to me, for reasons I don’t know. Perhaps it prepared me for challenges that still lie ahead.

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While I was studying at university, I kept in touch with the Foundation. When I was ill, the Foundation really helped us. They gathered half million rubles for my treatment! In addition to that, I’m very grateful to the volunteers who would come to see us. I participated in their photo project, and had a go at visiting hospitals. So it seemed entirely logical to ask whether it was possible to do some work for them. They invited me for a full-scale interview and immediately made it clear that I wouldn’t get any kind of free pass. I completed a four-month trial period and am very happy and very lucky to be able to work here. I really want all my activities, my work and my daily life to benefit the people around me, my friends and my loved ones.

Being needed, useful, important—these are my priorities. But just like any ordinary girl, I also want to get married and have children, and for everything to be wonderful!

Donate and get a special T-shirt

Donate and get a special T-shirt

Do you remember Nadia and her birthday party? To make her fundraising event more special she ordered special T-shirts that looked so great that we've decided to make them available for everybody.

These unisex T-shirts are available in sizes S, M, L and XL. Each donation of at least $40 provides you with one T-shirt.

We do have also t-shirts for running. You saw them on our friends at Marine Corps and New York marathons. If you want to order this type of T-shirt please contact us at donate@podari.life. 

Person of this month - Masha Skrypnik

Person of this month - Masha Skrypnik

Another story about our “alumni” from our jubilee calendar. Person of this month - Masha Skrypnik - feels much more confident as a camera operator than as a model. Masha is a future camerawoman, currently a student of the Institute of Television. It all began from photography, the most common hobby of teenage hospital patients. Seven years ago Masha was diagnosed with leukemia. It took her three years to recover. She had to put up with the fact that there would be no further career in sport, but she learned to wait and see beauty even in the most common things around her. Photography and the “Filming school” (a volunteer rehabilitation project of Podari Zhizn, where boys and girls participate in video recording and processing) helped her a lot and took Masha to the “magic world of cinema.”

Masha, please tell us about the new and interesting events in your life.

It is probably the best time for me now. I begin to feel my freedom and make my first steps into adult life. I have graduated from school, attended various pre-entry courses, and got enrolled into University at last. Now I am in my first year, studying to be a camerawoman. My love for  camera began from the “Filming school”.  I said to myself: “This is what I want to do -  I want to be a director of photography.” So now I am on my way to this goal.

Seven years ago you had to achieve another goal, that of conquering your illness. How did you become a hospital patient?

I was ten at the time. I practiced gymnastics at a sports club, and all of us had to undergo regular health assessments.  After one of those exams the doctors called my mother and told her that the results of my tests weren’t good. I repeated the test several times. Finally, I was taken to hospital by ambulance, and the next day I learned that I had blood cancer.

So what was your reaction to this news?

My reaction was rather unusual. At the end of that summer, our sports team was to go to a training camp in Crimea. And I was upset not because of the future treatment but because I couldn’t go to the competitions. I even begged my mother to let me go there – I said I could  just go, without excessive training. I was just a kid, you know, you don’t understand that the situation in actually tragic when you are a child.

Your treatment lasted for almost three years. What are your impressions of those three years at hospital?

On one hand, it was hard. Your look changes, and you always compare yourself to other people. I was exhausted but still tormented myself with questions like “Why do I look so different?” You feel terrible after the chemo, and when you take hormones, your emotional state is so unstable that you jump from laughter to hysteria within five seconds. But on the other hand this period is still a part of childhood for me, and a rather funny part. Before that, I was constantly training in the gym instead of going out or playing. And when I was at the hospital, I had lots of friends and lots of time to spend with them.

How did you spend this free time?

I remember I became an avid reader at the hospital, I just devoured one book after another. But if there was somebody else in my ward, somebody whom I knew – well, naturally, we had a good time. Playing, drawing, or making some handcrafted souvenirs.

Certainly during these three years there were some moments when you wanted to give up. How did you cope with them and make yourself fight?

At first I needed no special support. I was a child after all, and didn’t understand that my illness was so serious and could actually be fatal. I had to hearten myself up only before some unpleasant procedures, such as injections or lab tests. I told myself, “Well, Masha, you should be patient and shouldn’t cry, because if your mom sees your tears, she will be in tears herself. And this is what we must prevent.” But once there was a terrible moment. I had to spend four weeks on hormones instead of two, and also my nose was almost constantly bleeding. It was hardly bearable not only physically but emotionally. I didn’t want any injections, or pills, or other drugs, I justed wanted to be left alone. At that moment, not only my family and doctors but also volunteers from your charity came to help. It is thanks to them that I wasn’t left alone face to face with my problem. It is wonderful that the volunteers try to distract even the saddest and the least talkative kids, try, so to say, to pull them out of their shells. I am grateful that such people were around me at that time.

 

Tell us about the time after the hospital. Was it difficult to return to your former life after these three years?

Well, although I mainly lived at home in Moscow, I always felt that I was far away from the events of normal life. You see, I was on the verge of adolescence, 12 or 13. This is the time when new friends appear at school, when you become interested in new boys. And  after missing these three years at school, I felt like an alien. On the other hand, my classmates visited me at home during my illness, sometimes even at hospital. I always had contact with somebody. So finally I joined their company rather quickly.

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Did you want to forget about this illness?

Not actually forget, but do so that other people would have no access to this story. Sometimes they ask too detailed questions, touch upon too personal aspects. But in any case you myst never forget this experience - after illness you see everything differently, and your priorities change.

So how did your perception of life change?

I believe I have become more sociable, more open-hearted. Now, if I see a person who needs help, even the smallest assistance, I will try to help. After all, now I know the importance of support from my own experience. I sincerely thank all people who donated money for my treatment. Their behavior is a role model for me. I am also sure that my illness made me stronger. When I face difficulties, I never give up but try to find the way out.

Did your relatives also change after your illness?

Yes, especially my mother. She fusses over me a lot. I take everything easier: well, let’s say I fall down, I hurt my knee or cut my finger, but this is something that can happen to anybody. For my mom  it seems a disaster. However, it is understandable after all she went through with me.  I am so grateful for her support and love.

What would you wish to the children whose treatment is still going and to their parents?

Ignore the glances and the words of other people. You should just forget that you don’t like your current look, just understand that this is the time when you fight for your life and future. In the end everything will be as it should be and as you want it to be. As to their parents, I wish them patience and lots of strength - enough for not only for themselves but for their child as well.

Zhenya Vaneeva wrote down 12 stories from young cancer survivors. Every month we will bring you one of these touching personal talks.

A Very Charitable Birthday

A Very Charitable Birthday

Nadia, who moved recently to San Francisco, CA from Russia, has decided to turn her birthday party into a special fundraising event

"This year I am turning 30! Hitting a milestone, as they say. I have everything I need. I have a beautiful daughter, loving husband, amazing family and wonderful friends. My life is full of love, joy and adventures. I thank the Universe for what I have every day. I need nothing else. This year I don’t want to receive any presents for my birthday, I want to give them all to those who need them more than I do."

Nadia works at a family restaurant near the Golden Gate Bridge. The owners of the Sandrino Pizza and Vino supported her cause and turned a regular Sunday eat-out into a special celebration. She raised more than $1,200 and we are honored that she has chosen Podari.Life to benefit all her gifts.   

Happy birthday Nadia, and thank you and your friends and family for becoming Podari.Life supporters! 

Meet our champion - Nikita Merkulov!

Meet our champion - Nikita Merkulov!

VIII Worldwide Winners Games will open in only 100 days and here is the best way to get you prepared for the parade of champions - we start a countdown to WG VIII by publishing a series of interviews with childhood cancer survivors. Meet our first champion - Nikita Merkulov!  

Great Fundraising in Miami

Great Fundraising in Miami

Coffey Burlington, a Miami law firm, hosted a celebrity-filled fundraiser for Podari.Life on January 5, 2017. The elegant event took place at Tanuki Miami Restaurant, and donations went directly to Podari.Life.

Top Russian celebrities like fashion designer Masha Tsigal attended the event, even presenting a heartfelt speech about the non-profit and how its mission impacts the lives of so many Russian children with cancer. Other prominent attendees include fashion designer Fabrice Tardieu, journalist Julia Bordovskikh, television producer Sergey Kalvarsky and the mayor of Bal Harbor Gabriel Groisman.

Coffey Burlington sponsored the fundraiser, and leading U.S. lawyer Kendall Coffey spoke on the importance of Podari.Life’s mission to fight childhood cancer. He shares the non-profit’s belief that money should never be the measure of a child’s life. Mr. Coffey surprised guests with a lively ballroom dance performance by champion dancers Loreta Kriksciukaityte and Aleksandr Skarlato, leaving guests in awe.

Coffey Burlington also organized an art auction for two beautiful pieces of work from Miami's Galleria Ca’ d’Oro. And Hublot displayed their luxury watches for guests to try on during the event. Both businesses donated a portion of proceeds to Podari.Life.
 

Your help in 2016.           Thank you.

Your help in 2016. Thank you.

It is the end of the year — time to sum up what we have reached and, of course, time to make New Year's resolutions. 

We have prepared this document to show you what a difference you make.

It is with your help, that we managed to fund an internship for the first Child Life Certified specialist this year. It is because of you that we managed to make a first a step in transferring CAR T-cell Technology and so many other things — things we would never accomplish without you.

We are more than grateful for your trust and belief! We have so many things planned for next year, and we can't stop dreaming of how many things we can change for the best together. 

Please, take a closer look at our results here: http://www.podari.life/results/

Perfect news for Halloween-fans!

Perfect news for Halloween-fans!

Thinking of where to look for a perfect Halloween costume? 
We've got your back! 
You can sell your kid's old costume, buy a new one AND help children! 

Dolls that cure

Dolls that cure

Dolls can not only entertain, but also can be used in treatment. It's already interesting when doctor comes in with a doll. But when he explains all the medical manipulations using the doll, the child feels much more secure.

Manikin dolls have been helping clinical psychologists in Dmitriy Rogachev Federal Center for Onco-Hematology (FNKC) for several months. Head of Department of clinical psychology FNKC Alina Khain explains why they are helpful and how children interact with such assistants. 

"My colleagues and I (clinical psychologists) have always used games and toys to help young patients of our clinic to cope with psychological difficulties of the treatment. Our opportunities increased significantly in the past few months thanks to the help of Podari.Life: we received a medical doll Manikin. We are happy to share our first impressions with you. We are still looking at them as at "first" impressions because the possibilities this doll opens seem countless.
First of all, everyone who meets a doctor carrying a very large doll, smiles. One of the most important things a game should provide (and a medical game especially) - positive emotions. Children find themselves in an unusual and frightening situation шт a hospital - everything that was comfortingis now inaccessible. Their home, toys and their usual routine, all the people the love stay at home that is far away now. The parent that arrives in a hospital with a child, is often not in a good emotional state as well and sometimes the emotional state doesn’t let them even play with a child. So when a doctor comes in with a doll - it a very pleasant surprise, and it helps start communication even with the most shy, scared and "closed" children.
The Manikin doll is unusual tool, especially of its size (its size is the one of a one year old child), it attracts attention and children want to touch it. If you look at it closer - it has no hair, and you will see a "tail" of the catheter looking out from under its clothes. This is not only to explain a variety of medical procedures and manipulations to a child: setting the catheter, as well as other puncture operation for example. It is also very useful to make it easier for a child to identify with the doll, to share his worries with its help. It is so much easier toexpress their attitude to the disease, treatment, and all their emotions while playing. This doll can change its face expressions, it can "feel" and thus let our patients share their feelings without fear.
It is very often that the child chooses the role of a parent or a doctor while playing. They feel safe that way. They can play the role of an "expert" and thus regain the so much missed sense of initiative and active position in communication with an adult. When we let the child choose how to play, we help them to restore a sense of control, which is seriously undermined by the disease. The game also provides a convenient language for communication and mutual understanding.
As I already mentioned, Manikin doll is also our assistant in increasing the child's awareness, preparing him to the difficult moments in his treatment. Every child of every age needs to understand specifically what went wrong with his body as well as what is going to happen. Sometimes the game lets us understand what causes the child’s fear.  
While playing kids sometimes asked questions about treatment that they never asked us directly. For example, questions about the reason for their disease. There are also cases when we know that the fear is caused by the forthcoming new type of treatment. So we use Manikin doll to prepare the child psychologically. Just like our foreign colleagues we "study" the procedure with the help of the doll, we try different roles on, make it completely understandable, familiar, "our own". We find the most disturbing elements and in a game we walk through all the ways of psychological support with a child, his parent and the doll. "

Dear friends, this miracle assistant-doll appeared at the FNKC thanks to all of you. And we are very happy that it is now much easier for children to talk about their disease, and therefore to overcome the fears associated with it.     

This not only makes the work of the doctors easier, but also makes the hardest period in life of the entire patient's family much more comfortable.

That's how your donations are working

That's how your donations are working

Here is one of the stories to show what you do to make future of our kids better.

Eight out of ten children diagnosed with "acute lymphoblastic leukemia (ALL)", strange as it may sound are the lucky ones. There is a sufficiently effective protocol of the cancer treatment developed for them as well as a selection of drugs available to hospitals. If this treatment is applied on time at a modern research hospital such as FNKС (Federal Oncohematological Center), the therapy provides the high level of survival.

For the remaining 20% children who confront ALL the standard therapy is ineffective... Most of them couldn't be cured even by with bone marrow transplantation. Until recently, doctors had no effective tool to fight this kind of cancer. Since the beginning of the 2010s the world's leading cancer labs - especially ones in the United States - are working on a technology called Chimeric antigen receptor (CAR) T-cell therapy (therapy with T cells with the chimeric receptor to an antigen).

The appearance of CAR T-Cell method has become possible as a result of both radical progress in understanding the nature of cancer as a disease, and in connection with the development of genetic engineering technology that occurred after a complete translation of human genome. 

The method uses patient’s blood T-cells that are rebuilt in the genetics laboratory to carry specific antigens that confront cancer and then introduced back into the blood. They attack other cancer cells in blood, providing the cure to a patient. To date, CAR T-Cell Therapy remains in an experimental stage, with multiple clinical trials conducted. Such tests are held in the US and Europe, but not yet available for young patients in Russia.

Podari.Life joined forces with FNKC  and the sister Russian charity «Podari Zhizn» to bring the essential cure opportunity to Russian kids. We started the project with a purpose to include Russian patients into CAR T-cell therapy clinical trials. This is a complex scientific and administrative process (technology transfer). The first step is to receive the consent of the Ministry of Health of the Russian Federation: the institution requires a special documentation for the method that corresponds to Russian medical standards. This is a precluding condition to make CAR T-cell therapy available for patients in Russia. Another side of the story is to ensure the understanding from the authors and patent owners in the US that Russia has scientists and doctors who are able to use CAR T-cell therapy and achieve a positive result.

Today we are pleased to announce to our donors and supporters that with your generous help, we made the first step on this long road. Podari.Life invested the creation of the clinical description of CAR T-cell therapy under the Russian ministerial standard. The document will be submitted to the Russian Ministry of Health to obtain consent for conducting the tests. For Podari.Life this step is very important also because it is fully consistent with our mission of public charity - to promote the development and dissemination of knowledge, allowing better and more efficient fight with child cancer in Russia.

Thanks to your donations we were able to invest $5,000 towards this important goal. We'll keep you updated on further advancement. 

Music and Poetry

Music and Poetry

We held our inaugural fundraising event on June 7th — an Evening of Music and Poetry, featuring the actress Chulpan Khamatova, who is a co-founder of our Russian sister charity “Podari Zhizn” Foundation,  and violinist Dmitri Berlinsky.  

We managed to raise $29 745!

The event took place at Bonhams Auction House.  Chulpan Khamatova's recital of the poetry of Boris Pasternak and Marina Tsvetaeva was intertwined and overlaid with the Quintet of Dmitry Shostakovich, where Dmitri Berlinsky was joined by four distinguished musicians - Leon Livshin, Anna Rabinova, Richard Young and Timotheos Petrin.  

"This Quintet by Shostakovich has a lot of children's spontaneity to it, naivety and purity despite the fact that it was written during a very tragic period of history, back in 1940" said Dmitri Berlinsky. "Pasternak and Tsvetaeva created their poetry at that same time, which is why it echoes the music of Shostakovich. We are happy to present a dialogue of this poetry and music for the first time".

Dmitri Berlinsky. Photo: Vladimir Badikov.

Dmitri Berlinsky. Photo: Vladimir Badikov.

"Our evening of music and poetry is a token of gratitude to those who are helping Podari.Life" said Chulpan Khamatova. "The US public charity took on a critical and difficult task of raising funds and organizing educational courses for Russian oncologists, hematologists and psychologists. This training and expertise transfer that will allow our doctors to keep up with the latest developments and best practices of global medicine. I am happy that those who support Podari.Life understand this critical need and have chosen to help."

The evening was full of surprises and one of them waited for Chulpan Khamatova herself. Masha Dyatlova, a cancer survivor who received her life-saving bone marrow transplant and treatment at a Moscow oncology clinic, attended to evening. Masha has now blossomed into a beautiful young lady, we could hardly recognize her from a child who was given 15 days to live. 

(All photos: Vladimir Badikov)

The show was also attended by actors Yevgeny Mironov and Yulia Peresild, the General Consul of the Republic of Kazakhstan in New York, Raushan Esbulatova, and other distinguished guests. All event costs were covered by volunteers and sponsors. All ticket proceeds and funds raised during the evening will go directly into the educational programs of Podari.Life, including the training for clinical psychologists at the Federal Oncohematology Pediatric Center and a purchase of medical demonstration dolls that allow doctors to explain the treatment process to young children.

We thank all of our supporters! We are very grateful to The Cherry Orchard Festival who presented the event as part of the New York tour of the Theatre of the Nations, Bonhams Auction HouseSteinway & SonsBurger & Lobster, Tastemakers, Jewel of Russia, our lottery sponsors, and a team of volunteers - Anastasia Efimova, Katya Gorbatiouk, Janara Khassenova, Maria Leibholz, Elena Pitaleff, Inna Post, Elena Sardarova, Eleonora Stefantsova, Rada Sumareva and Helen Vaysman - who joined their efforts, talents and love to make this dream evening come true. 

Personal Message

Personal Message

Dear Friends!
Our June 7th NYC event preparation is in its full swing! Our stars of the evening Chulpan Khamatova and Dmitri Berlinsky have met in Moscow and have immersed in the creative process of shaping the performance programme.

Thanks to the generosity of our donors and volunteers covering the costs of this event, the proceeds and donations will go towards the causes of Podari Life.

   

Special event for our supporters

Special event for our supporters

Please join us for an evening of Music and Poetry presented by Cherry Orchard Festival.

June 7th 2016, New York, NY.

Featuring Performances by World-Renowned Artists
Chulpan Khamatova, poetry reading & Dmitri Berlinsky, violin

With appearance by stars of Theatre of Nations (Moscow, Russia)
Evgeny Mironov · Julia Peresild · Yulia Svezhakova · Alexander Grishin · Pavel Akimkin · Alexander Novin · Dmitriy Zhuravlev

Concert and VIP-reception

Thanks to donors of Podari Life, Russia will get Child Life professional

Thanks to donors of Podari Life, Russia will get Child Life professional

In March, Russian clinical psychologist from Federal Oncohematology Pediatric Center (Dima Rogachev Center, Moscow) Ekaterina Stefanenko begun her courses in pursuit for Child Life Certificate. She will become the first certified psychologist in Russia with the help of gracious donors and supporters of Podari.Life Inc. Ms Stefanenko’s education was initiated by our sister charity from Russia - Podari Zhizn Foundation.

Child Life qualification is a special psychology degree certified by Child Life Council. Training provides professionals with extra knowledge and skills to work with children in hospital care.

"This qualification is a critical part of the childhood cancer cure, - says Ekaterina. Cancer patients need to spend months in a ward where every aspect of known life is different and sometime scary. Clinical psychologist assists kids and helps them to cope with challenges of hospital care, illness and severe change in their daily life".

She underlines that Child Life model is play-based, explanatory practice that prepares children for complex manipulations through joy and storytelling.

Child Life model has emerged in the West after The Great War, then many wounded and sick children ascended to hospitals for surgery or general care. It soon became evident, that neither doctors nor nurses could cope with child frustrations, fears and lack of normal, playful and educational activity every kid expects at an age. Emma Plank, a colleague and friend of Maria Montessori, the founder of humanitarian pedagogy, laid foundations for Child Life methods. Her work and the endeavors of her students and followers expanded the idea: to help children and their parents to cope with a harshness and burden of hospital procedures and isolation.

"Modern day Child Life practice includes different components, says Ekaterina Stefanenko. "First, there's a set of tools and techniques that psychologist uses to help to overcome the loneliness and at least partial separation with family. Second, psychologist needs to explain to a child what is going on. It's both the nature of his illness and the manipulations that doctors apply to they. Finally, psychologist is there to manage child's reaction to countless limitations and restrictions that cancer treatment establishes".

Child Life method arms the professional with a valuable arsenal of proven successful tools, Stefanenko adds.

Ekaterina Stefanenko is a graduate of Moscow State University, with merits, in Clinical Psychology. She works at Dima Rogachev Center for 4 years. After a graduation from the program she will return to Moscow and becomes the first certified Child Life psychologist in Russia.

We will keep you updated on Ekaterina's progress.

Shop at Amazon, support Podari.Life Inc

Shop at Amazon, support Podari.Life Inc

When you are shopping at Amazon.com, you can support our goals. If you register our charity as your preference at  Smile.Amazon Amazon will donate  0.5% of the price of your eligible AmazonSmile purchases to us! AmazonSmile is the same Amazon you know.

Same products, same prices, same service — double pleasure from shopping!