Health  Russia Project #21423

Add Marrow Donors: Eliminate Leukemia Worldwide

by Karelian Registry of unrelated donors of hematopoietic stem cells Vetted since 2015
Add Marrow Donors: Eliminate Leukemia Worldwide
Add Marrow Donors: Eliminate Leukemia Worldwide
Add Marrow Donors: Eliminate Leukemia Worldwide
Add Marrow Donors: Eliminate Leukemia Worldwide
Add Marrow Donors: Eliminate Leukemia Worldwide
Add Marrow Donors: Eliminate Leukemia Worldwide
Add Marrow Donors: Eliminate Leukemia Worldwide
Add Marrow Donors: Eliminate Leukemia Worldwide
Add Marrow Donors: Eliminate Leukemia Worldwide

Despite the summer, a hot, relaxing time, we continued to recruit new donors and re-type those donors who are already in the Registry. In total,  in July 23 donor samples were received in the laboratory. Most of the donors sent us their samples by mail. This recruiting method is becoming increasingly popular - you can fill out documents and collect smears at home, and then send us in a registered letter.

During the 2nd half of August 26 potential bone marrow donors  were recruited in Kostomuksha through the local city hospital. The recruiting campaign  was organized by doctor Vera Kudryavtseva, one of our the precious volunteers.

In August 25th we participated in the youth forum #Kareliya_100. There we informed the participants about bone marrow cell donation and how they can help as donors and volunteers.  Everyone could take smears tests and fill out forms for entry in the Karelian registry. Twenty one the Forum participant decided to join the Karelian Registry and become a potential bone marrow donor.

September begins as a very busy month. First,  a photo exhibition dedicated to our Registry was opened in Kostomuksha on September 1st.   The idea of creating a photo exhibition that would tell about the Registry and explain how to become a potential bone marrow donor belongs to our passionate and long- time friends  Elena Kochetova and Andrew Barsukov.  For the first time photos were displayed in the Petrozavodsk State University in April 2018. Then there was a thought "to travel with it on the cities and villages", and Kostomuksha became the first city where local residents got introduced with it. We not only visited the opening of the exhibition, but also held a small campaign to recruit donors in the Center for Cultural Development "Environment" where the exhibition was displayed. In result 34 residents of Kostomuksha joined the Karelian Registry.

On September 7th we made a short landing on the farm in 50 km from Kostomuksha where the Forum “Creative Working Initiative Youth “ was held. It was the 8th forum of young community leaders of Karelia since 2010 .  Yaroslava Burmistrova, our new assistant from Kostomuksha, talked about bone marrow donation and Yuri Ioffe answered the questions of the forum participants. Eleven people were added to the Registry bone marrow donor data base that day.

September 14 – 16 we hold another recruiting campaign in Petrozavodsk. We continue our routine job: to grow the bone marrow donor data base. We have a difficult task that requires commitment, perseverance and patience: we need thousands of potential donors! And only a few of them will be in demand as real donors. But this is normal practice. Despite the difficulties, we are able to achieve the main goal – to give bone marrow to people with deadly blood diseases who need it to save their lives.

Since the beginning of the year, the Karelian Registry has received 34 requests for donors’ search. In a few cases, we were asked to do additional work. As a result, 5 donors were activated and tested for compatibility with patients, but, unfortunately, did not fit. But another 7 donors were fully compatible with patients from Russia, Turkey, Germany and Estonia. And finally, two female donors from our Registry shared their blood cells with patients – a 7-year-old boy from Argentina and a 20-year-old girl from Estonia.  And it became possible only with your support, our dear friends. Together we can do anything!

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The Spring is finally here: a wonderful time of the year, full of new energy, new hopes and good expectations. The Spring is the celebrating time for the Karelian Registry of Bone Marrow Donors. In April we celebrated our birthday and the National Blood Donor Day with a big Spring recruiting campaign and series of informational meetings with students. All activities took place in Petrozavodsk and Kostomuksha – the biggest Karelian cities. In result, one hundred new potential donors were included in the Registry.

For seventeen years, on the amazing Karelian land, a man-made miracle – the Karelian Registry Bone Marrow Donors, one of the first in Russia, has deliberately worked creating the national bone morrow donors database.

It all started on 28 April 2001. On the Bank of the Onego lake, with the support of one of the world's first registries – the Stefan Morsch Foundation,  the first campaign to recruit bone marrow donors took place. In the very beginning we had only  202 donors. For 17 years, the Karelian Registry  implemented  27 recruiting campaigns in 136 cities and small towns around the Russia. Now  4324 potential bone marrow donors are listed in the Karelian Registry database. Our most active cities are Petrozavodsk, Moscow and Kostomuksha.

Our the greatest Thank You to all who have been helping us for all these years to grow bone morrow donors database and save lives!   

In May we celebrated another miracle – the 100%matching of  the Karelian donor to a 20-year old woman  from Finland. The blood sampling took place in the clinic in Germany on May 30th. Unfortunately, the transplantation surgery was postponed because of the patient health complications, and it is planned to be done in June. We believe that the transplantation goes well,  and soon the young lady will be healthy again!

At the end of May another request for bone marrow donor turned out to be lucky: the patient  was fully compatible to one of our donors who now lives in Germany. The request came also from Germany. Now we have to examine the donor directly there, without bringing him to Russia. It the first experience of this kind. And if everything  goes smoothly and transplantation is successful, it is another reason for celebrating – celebrating  life.

                                                   Dear Friends,

       Thank you for your support, for your big hearts and compassion! 

                                  Together we can do anything!  

Links:

                                                   Dear Friends,

New year is gaining momentum, and with it - our work! We continue recruiting campaigns and begin thematic classes about bone marrow donation movement for 11th-grade students Petrozavodsk. Our volunteers successfully made their debut at the University Lyceum and Gymnasium 30 and are waiting for invitations to other schools of the city. We hope that now the theme of bone marrow cell donation will become closer to high school students and won’t scare them away of doing this good deed in the future.

Since the beginning of 2018, the Register has been replenished by 54 donors. Now Karelian Registry counts 4318 donors and receives more and more requests for bone marrow donors from all around the world. In 2017 we received 32 requests, majority of them came from abroad. Four donors from our database turned to be fully compatible with patients. One donation was undertaken on March 2018, and two cases are still in work.  

Statistics is indifferent, heartless, it tells you practically nothing, right? We want to share with you one story, we call it “The Argentine story”, to show you what those numbers are about.  

Registers are strong by their sizes. The more donors – the more chances to find a matching donor. We are consistently growing but we are still a tiny registry in comparison with giants from Germany or USA. When we receive a request from abroad, usually it means there is no a 100% matching donor in the world biggest registers, and small registries are involved into the search in hope for miracle. And sometimes miracles happen.

In September 2016, during one of our recruiting campaigns, a new donor, a resident of Petrozavodsk, was included in the Registry. And in the end of November 2016 we received a request for the donor from Argentinian search center for 3-year-old boy. This new donor was fully compatible with the boy. Prior to The new 2017, Argentines sent a request for confirmation of the donor's type, which was to take place in New York, USA. After 1.5 months, we got the result, confirming that our donor is fully compatible with the boy. Then the long silence came.

A year later, in the end of November 2017, the Registry received a letter from Argentina with request to provide survey data of the donor for infectious diseases. The donor agreed to a further examination, and, after receiving clarifications from Buenos Aires, we proceeded with examination. To the end of December the donor’s results have been received and in January 2018 the donor passed the full examination by doctors, specialists in different areas.  Meanwhile the Registry had been resolving issues with the clinic in Germany that would collect donor cells, and other numerous organizational issues.

In the morning of February 25th 2018 donor got a plane to Berlin, and visited a private clinic on the 26th morning, where the doctors did check up again.  On the 28th morning the donor got the final verdict on the validity of her as the donor. The checkup showed that everything was fine, i.e. the donor was healthy. After 5 days of the donor’s stimulation, on March 5th, the cell sampling was done. Immediately, the courier with the container, where the donor’s cells were kept at minus 4 degrees on Celsius, went to the airport, took the plain from Berlin to Frankfurt, and then the direct flight to Buenos Aires. Just 16 hours on the road, and March 6th at 8 am the courier passed this container to the clinic, where the same day TKM was performed.

 While there were those events in Berlin, in Buenos Aires, from February 28 the boy had been undertaking deadly chemotherapy (called conditioning) to suppress his bone marrow and thus be prepared to accept a donor cells. And God forbid, if something happened during these days (from the 28th to the 5th) in Berlin - a disease or injury of the donor, or something else that would prevent the donation - the boy would die...

The transplantation of bone marrow was successful. Though having a lot ahead to overcome, the boy was given the second chance for life.  So many people worked so hard to make it happen.  

There is nothing miracle in making miracles, there are just good will and actions of indifferent people there. We decided to tell you this story to let you know that all of you are participants of it. Even if you donated only once, even if it was tiny sum, it still helped us going forward and growing the bone morrow donors database. You all are miracle makers, do you know that?

               Thank You for Being with Us and God Bless You!

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                Our Dear Friends! Merry Christmas and happy New Year!

      We wish you a wonderful holiday season filled with joy and happiness!

                 Thank you for your support and loyalty to our cause!

The year 2017 is almost over. It was busy, hectic, and successful . Here is our latest news of the year.

In November we held a big recruiting compaign, which was attended by 123 people. One hundred eleven new potential donors were recruited during the campaign. Traditionally it were mostly women – 93 of 111 people. We wonder if this tendency will be reversed one day and we have more men-potential donors? Five cities of Karelia, and also Moscow, Ivanovo, Saint-Petersburg, Kotlas, Severodvinsk, Voronezh were participated in the campaign. Thank you all, caring people!

On Saturday, December 16th, in the Youth Cultural Center of city of Kondopoga, the last campaign to recruit potential bone marrow donors took place. The organizers of the action were members of the Youth Association "Oatmeal" under the guidance of a teacher Alina Yarovoy. This was our first experience,  when school students voluntered as recruiters, and we must say that it was a good experience! Students learnt in the practice how  to communicate with prospective donors,  to check the completion of documents, to explain how to take swabs and to finally say "Thank you!" As a result, another 14 people became potential bone marrow donors,  and it was a nice way to end the year!

The year 2017 turned to be good for us  in terms of recognition of our work. November 30th  the Karelian Registry was rewared with a Thank You Letter and a Diploma of The First Degree for the victory in the Contest of Public Annual Reports of socially oriented noncommercial organizations of the Republic of Karelia and for implementing projects in the sphere of interethnic and interfaith relations. It is important for us: we have won it here, in Karelia, where we work.  This is recognition of the importance of all that the Registry has done for all the years of its activity.

We hope you continue to support us in the next  year. Together we can do anything!

Links:

Human is a creature that by nature rejects all the unpleasant, scary, and that's fine. The disease is unpleasant, leukemia is scary. No one will voluntary read and listen about leukemia, bone marrow donation, and transplantation until the trouble affects him or her personally, even only tangentially. So it was with me.

 

I, like many people, was in blissful ignorance until a tragedy happened with a son of my classmate: he died from leukemia. A few years later I was surprised to learn that there is a registry of bone marrow donors in my city Petrozavodsk, and it is one of the first registries  in Russia. And that's all. I didn’t have even as second of doubt: I had to be in the Registry.

 

This is the unpretentious story of my arrival in the Registry. Since then I have been a volunteer in The Karelian Registry of Bone Marrow Donors. It has been a happy time. Though, probably, a combination of the words "happiness" and "leukemia" sounds at least strange. And yet these years have been filled with meaning and very valuable content. What are they built of? Of meetings, successes, disappointments, insights, downs...

 

Remember how I got an idea to tell youth about the Registry, "eye to eye", to dispel fears and debunk the myths surrounding bone marrow donations. Young people are only in the beginning of their life, and they need to know that the victory over leukemia in their hands. And I went to the students. Remember how I was worried before the first meeting, how prepared and searched for words. Remember fifty pairs of wary eyes: they knew that I was going to talk about bone marrow donation, but they had no idea what it was, and were drawing in their minds terrible pictures with a drill, drilling their spines... I remember after my first words, "I am a potential bone marrow donor and I am standing here in front of you, alive and well, and no one drilled my bones," a lightweight exhale ran through the audience. The ice melted, and the conversation turned out very emotional and intense. But the main thing happened later. I knew that it is necessary “to sleep” with this information, to have a lot to read and ponder. It is necessary to realize the degree of responsibility for the decision to join the Registry. But that night a very young boy approached me after the meeting with a question, "I turn 18 years old in a week. Where do I come to join the Registry?" It was the first bone marrow donor recruited by me. Later, there were other audiences, other events, meetings and donors, but I will never forget that boy.

 

I remember another big action in our University, when more than 100 University students became potential donors. Two students - sisters happened to be the most valuable donors for me. They were my school students a few years ago, and I told them about bone marrow donorship in the class. Becoming college students and learning about the campaign holding at the University, they came to the meeting and became one of the first who joined the Registry. My volunteer happiness is building of the situations like this.

 

The Registry is his people.

One of them is an optimistic Natasha whose new bone marrow has been donated by the donor from Italy. He not only gave her his stem cells. He gave Natasha the second chance for life. He gave Natasha’s little daughter - her mother, and her parents - their daughter... And now she is our main propagandist and advocate of bone marrow donorship. Laughing, she calls herself "live advertisement of bone marrow donation".

The Registry is Andrei and Lena, the organizers of the bone marrow donor movement at the Petrozavodsk University. All our actions, flash mobs, cranes and many, many more are possible and happens thanks to them, their enthusiasm and energy. The Registry is Anton who lives in the most isolated corner of Russia, in Chukotka. On the edge of the earth, he has recruited new bone marrow donors. Because it's right thing to do. Because it is necessary.

 

The Registry is his history.

This is the story of a three-year old Mirik, whose donor was found abroad, the money for the donor was collected by hundreds of kind people, and two weeks after the transplantation, we received typing results from the last recruiting campaign: one of our new donors was fully compatible with Myric. All the months of the boy’s illness his potential donor was there, in the same city, but we didn't know and looked for donors in the international database... Thank God, we have found it! But if we have not?

 

It is a tragic and heartbreaking story of 28-year-old Andrew, killed by leukemia: the compatible donor appeared in our Registry a month after the death of Andrew. We tried hard to find a donor for Andrew around the world, but we failed... He left a wife and little daughter...

 

I don't know what else I can tell and what it is necessary to tell so that all understand: the rescue of patients with leukemia is a duty for each of us.  This disease can trap anyone. When we are together, we can fight.

 

I have been asked many times, "Why do you do this?"

In short – it is necessary to do, that's all. If to go slightly into detail, there are words in my favorite "Little Prince": "Each should be asked to give what he can give." I will allow myself to paraphrase these words: “Everyone should give what they can.” I give what I can give. I do help the Registry, because my want, can and must happily combined here. All together we increase the chances of patients with leukemia. How do we do it? Just go to people and tell what everyone needs to know about bone marrow donation – "eye to eye". And it works: fears go away, the myths debunk, people come to the Registry to save somebody’s life one day, when it will be necessary. There is no other way here:  we are humans and we help each other.

 

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Organization Information

Karelian Registry of unrelated donors of hematopoietic stem cells

Location: Petrozavodsk - Russia
Website: http:/​/​bmd.onego.ru/​
Facebook: Facebook Page
Project Leader:
Yuri Ioffe
Petrozavodsk, Russia
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