Health  Russia Project #21423

Add Marrow Donors: Eliminate Leukemia Worldwide

by Karelian Registry of unrelated donors of hematopoietic stem cells Vetted since 2015 Top Ranked Effective Nonprofit

                                                   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!

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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.

Karelian Registry (Petrozavodsk) on the WMDD Map
Karelian Registry (Petrozavodsk) on the WMDD Map

The Karelian Registry continues it’s the main activity: recruiting potential bone marrow donors. The fall recruiting campaign started on August 29th in Kostomuksha and Anadyr, and two more cities, Rostov-na-Donu and Sortavala,  joined it on September 8th and 9th respectively. In Petrozavodsk the recruiting campaign was timed to The World Donor day - September 16th , and was held within the Petrozavodsk festival “Dobrofest” (Good Deed). The third year in the row The World Donor day takes place under the motto: “Thank you, Donor!”

The Petrozavodsk recruiting events began on September 15th in the Youth City Center and continued on the next day in the Registry’s favorite spot – the club “Begemot”. September 17th , under the  “Dobrofest”, the Registry held also an information session about bone marrow donorship. The session took attention of many people and turned to be quite successful. In total, 55 new potential donors were recruited during this campaign.

Here is what donors said why they decided to join the Registry:

"I was just thinking that somewhere could be a person who is sick with leukemia, and that I exactly would be suitable. So, if I'm not in the lists, this person will never get his/her chance."

"For me it's a chance to save another life. I think the worst thing for parents is to realize that there is no other ways of treatment for their child any more. It is the end."

"I believe that to assist someone in the difficult situation is a normal desire and the need for any human. Everyone should help another in the form that suits a specific person. Someone mows the lawn in the neighbor’s backyard, someone donates bone marrow, someone donates money."

                                               Thank you, donors!

And this is not the end. The fall recruiting campaign continued on September 24th, on The World Day of Fighting Leukemia. On that day dozens of the Petrozavodsk State University students attended The Volunteer Donor Movement School. It means The Karelian Registry of Bone Marrow Donors has got many new  supporters, and all together we will continue our work.

As one of our donors said, “We CAN make the world a better and safer place.”  Together we can do anything!

I am a Donor
I am a Donor
Recruiting Campaign and Information Session 09.17
Recruiting Campaign and Information Session 09.17
Our Donors
Our Donors
Our Volunteers
Our Volunteers
Our New  Volunteers - students of PetrSU
Our New Volunteers - students of PetrSU
Fall 2017 Recruiting Campaign
Fall 2017 Recruiting Campaign

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                              June Recruiting Campaign and More

During the last two months the Karelian Registry continued its routine work – recruiting new bone marrow donors. In June we had the longest recruiting campaign in our history. It started on 12th  of  June and finished on July 1st. Petrozavodsk, Sortavala, Arkhangelsk and Rostov-on-don participated in the campaign. June 12th is the state holiday in Russia -  the Day of Russia. On that day the site worked within the charity marathon "heart to heart", organized by the Karelian regional Youth Center in honor of the holiday. It was the first time we carried out the recruitment of donors under the open sky. The campaign took place despite the cold wind and the rain - 12 residents of Petrozavodsk celebrated the Day of Russia with accession to the registry. Isn’t it a beautiful way to celebrate the Day of Russia making good deeds? During this campaign our database grew by 82 donors, and now it has 4047 people.  The next recruiting campaign will take place in the end of August/beginning of September.

In May and June we also had two important meetings with the partner organizations. In May the Registry participated in a seminar for small and medium Registries in Cologne (Germany). During the seminar, speakers from well-known large registries discussed issues related to the recruitment of potential donors: how to organize a campaign to attract new donors, how to communicate with donors and how to retain them, how to create a quality management system, donor base, etc.. The workshop was not only intense and very useful, but also inspirational and gave us a new perspective.

In June we also had a meeting with our old friend, the head of the St. Petersburg public organization "Children and parents against cancer" Katerina Kiseleva. She came to Petrozvodsk to support us on the start of our June's campaign. We've known each other for many years and have completed many projects in cooperation with the organization. NGO "Children and parents against cancer" is engaged in complex support of children with cancer, which includes medical treatment, psychological counseling and rehabilitation. 

Everything what we do is possible only thanks to our remarkable volunteers and donors who believe in our cause, but perhaps the main credit belongs to its founder and leader Dr. Yuriy Ioffe.

Dr. Ioffe is a very determined person. He is determined to fight leukemia, and he has put 20 years of his life into this fight. The Russian database of potential donor is about 70,000 people - only 0.05% of the population. To have the high probability of finding the donor, the database must be 4 million people. Yuriy Ioffe devoted 20 years of his life to growing the National base of bone marrow donors. The growth is slow because every step requires money: the recruitment of donors, blood analysis, shipping and transportation costs, membership in the world network, and so on. It is very difficult to attract money because the Registry is not looking to help a specific person -  it does systemic aid.  When people ask Dr. Ioffe if he really believes that the goal will  ever be reached (from 70 000 to at least 2 million donors), he answers that he doesn’t think about it. He simply does his work, he does what he knows is the right thing to do, "No matter what" or "despite everything", remember? No arguing, we have many problems, but we are still moving forward.”

Dr. Ioffe admits that the desire to quit has occurred a few times: lack of money, time, staff — all are stressful and drain your energies; however meetings and correspondence with cancer patients and their relatives make him continue. “At such moments, you put yourself in their place and you understand why you need this registry. You understand clearly that there is no other way than to just move forward,” says Ioffe.

“Donorship is a miracle, states Dr. Ioffe. “You (a person) can save somebody’s life with a minimal effort. You can save somebody from a different country, from the other hemisphere. Everything that you need is just your good will. The donor and patient may have different political beliefs, different religions, different social status, and much more, but they have the same genetic code. In the end, all these differences just don’t matter when we are talking about life and death. That's what brings people together!”

                                                Dear Friends,

We would like to let you know that GlobalGiving announced the Rewards Bonus Day which will be held from 9:00am to 11:59pm EDT on Wednesday, July 12th. On this day, GlobalGiving will have $110,000 available in matching funds and will match at 40% for donations up to $1,000per unique donor per organization.

New recurring donations up to $100 per donor per project on Bonus Day will get an additional 100% match on the initial donation as long as it remains active for three months. The recurring match offer will be good throughout the entire Bonus Day.

 Please go to https://www.globalgiving.org/projects/add-marrow-donors-eliminate-leukemia-worldwide/

Karelian Registry of unrelated donors of hematopoietic stem cells .PROJECT #21423

There is not a fairy princess with a magic wand on our planet.  Only we, humans, are able to make miracles.  Hurry to make miracles!

Dr. Yuriy Ioffe
Dr. Yuriy Ioffe

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Organization Information

Karelian Registry of unrelated donors of hematopoietic stem cells

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

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