Feb 11, 2019

Our working days and small joys

exhibition in Kostomuksha
exhibition in Kostomuksha

Dear friends!

We've been very busy for last three months. What have we done for those three months?

We conducted another campaign to recruit new potential bone marrow donors. Our sites worked in the Karelian cities Petrozavodsk, Kondopoga, and Kostomuksha. For the first time, the action also was held in the small Karelian city of Suoyarvi. In result, 87 new potential bone marrow donors were included in the Registry. We also received letters with potential donors’ smears for HLA-typing from other cities of Russia. We are increasingly using postal services for getting new potential donors from different regions of Russia because it is convenient and takes not much time for those who want to be included in the Registry database.  This time we received 17 envelopes with applications from people who want to be donors.

In the last spring we came up with an exhibition which was opened at the State Petrozavodsk University.  The exhibition introduced students with what bone marrow donation is, who needs transplantation, how to become a bone marrow donor. We explained students why it is so important to become donors and that is not dangerous at all for their health. In the autumn our exhibition was taken to the North Karelian town of Kostomuksha. Then the exhibition visited Kondopoga – another small Karelian city. Many citizens who attended the exhibition decided to become potential donors. After Kondopoga the exhibition was displayed in a small Karelian town Suoyarvi. And again it was so popular among locals that many of the attendees joined The Registry as potential donors.

We learned how to talk about bone marrow donation. We came up with banners that were called "7 steps to bone marrow donation", and advertising agencies helped us to install advertising banners on the streets. It gave an excellent effect:  many people learned about us. We are proud of this project because it became the winner of the II degree of the all-Russian award "Complicity-2018" for contribution to the development of bone marrow donation movement in the category "Formula of Good Deeds". This is a very prestigious award. The all-Russian prize "Complicity" was established in 2010 by the National Health Development Fund and the Coordination Center for the Organization, Development and Promotion of Voluntary Blood Donation at the Public Chamber of the Russian Federation. We would like to note that for us this victory was the second in a row: in 2016, the jury of the "Complicity" honored the series of our recruiting campaigns "Flight of Life" with a diploma of I degree in the nomination "Formula of Good Deeds".

These victories are important for the Karelian Registry because it is a public recognition of our hard work. We are known all over the country, and people understand the importance of what we are doing. We are receiving many letters from different regions of the country where people express their desire to become bone marrow donors and ask us how they can do it.

And we are in a huge need of donors! At last Christmas we received another request to find a donor for a patient from England. And one girl from our database has matched him! Now we are waiting for the doctors to decide when the time is right for the transplantation. At the beginning of 2019, we again were looking for a donor - now for a patient from Russia. And we found him in our Registry! For this case, we are also waiting for the time of transplantation to be determined.

We are able to work because we have you, our benefactors. The more funds we have, the more potential donors we can attract. That's why every year we participate in the Generous Tuesday. This is a Russian version of the world campaign Giving Tuesday.  We received numerous donations during the Generous Tuesday -2018 campaign. It means that we can recruit more new donors to help terminally ill people survive.

Thank you so much for your priceless support! We greatly appreciate it.

Together we can do many things! Even defeating of leukemia is in our power if we fight all together!

our diploma "complicity"
our diploma "complicity"
new donors
new donors

Links:

Nov 16, 2018

Natasha

The Karelian Registry of Bone Marrow Donors is non- for- profit organization. It means we heavily rely on our volunteers. In other words, the fact that the Registry is effective is a great merit of volunteers. Last year we introduced you one of our wonderful volunteers, our “sunny” girl Elena Kolchenok. Today we would like to present you a special person – Natasha Kovalyova. This petite young woman has defeated leukemia thanks to bone marrow transplantation and now she is helping others.

The first time the disease crippled Natasha when she was 21. She caught a common cold that was persistent. After a few blood tests, Natasha learnt that she had myeloblastic leukemia. There was a long treatment, which at that time helped. And there were 4 happy years of remission. Natasha calls this time "four years of freedom". She could be with her daughter, see how she grows and enjoys life. And then  cold returned and again it didn't go away despite treatment.  "I lived with my parents then, far away from hospitals and doctors. Intuition made me call Tatyana Viktorovna, my doctor from the Republic hospital. She told me to come to the hospital right away. One short glance was enough for her to understand: relapse. It became clear: I needed a bone marrow transplantation because the third time will be the last one, " recalls Natasha.

"I have to survive for my daughter," she decided.  The daughter was six years old. Natasha's husband had died tragically a few months before she heard her diagnosis. If Natasha dies, her little girl will be an orphan.. Natasha asked parents not to tell Polina that her mommy is seriously sick.  The girl suffered from diabetes and any unwanted excitement or negative emotions were not good for her.  Natasha had to stay confident and positive for her daughter. This tiny woman, with all the misfortunes that had fallen on her, did not lose her high spirit and sense of humor.  "Serious illness? - So what? It's temporary, it is not for the whole life!"  "Hair fell out? –  I decided to change my image!"  "Okay, it's cool!"- were saying those who did not know about the disease.

There were long boring months in hospitals of Petrozavodsk and St. Petersburg. There was a hope that somewhere on the earth lives her genetic twin and one day she or he will decide to be a bone marrow donor…

The miracle happened: a donor was found,  in Italy. The  Karelian Registry helped to find the donor. The transplantation took place on September 29, 2011 at Raisa Gorbacheva clinic in St. Petersburg. Three months later, Natasha was able to hug her Polina and her parents again. The monotonous sick days were left behind.

"The first time God saved me, and the second time – the Italian. If he had not come to pass a blood test to be a donor, what would be now with me? My baby wouldn't have a mother. Make your own conclusions, people, whether to become a bone marrow donor. I can tell you one thing: my transplantation surgery gave me a chance to live. By the way, when I went to the hospital to do a puncture, the doctor said that he sent  my photo to the donor. He has never responded though. Maybe the photo did not reach him," Natasha says.

Now Natasha is 34 years old. She is an active and friendly, she raises hew daughter and helps the Registry. At the registry's recruiting campaign and meeting with students, she talks about her victory over the disease, inspiring people to become a donor. In an interview with the Karelian Internet newspaper "Republic ", she once said, " I can not thank the disease. When I was diagnosed, my daughter was just over one year old. I missed the precious moments of her growing up. I have photos and video, but I wasn’t there for her.  My illness has stolen a lot. Life is about the little things. It's minutes, hours, short days. I don't cling to life — I just started to appreciate the little things»

Natasha teaches this wisdom to everyone she meets. She keeps in her folder a gratitude letter to the Italian.  What if it happens that he will read it one day?  Thank you, donor!

                                         Dear Friends!

The goal of our work is to save lives. Without your help we won’t be able to operate and add new donors into the Registry.  Thank you for your support!  

This year’s #GivingTuesday will take place on November 27th and will kick off the giving season by inspiring people to collaborate and give back. GlobalGiving’s 2018 #GivingTuesday campaign will begin at 00:00:01 EST and end at 23:59:59 EST on November 27th, 2017.

This year projects will be competing for a portion of $150,000 Incentive Fund.  It meansif the Karelian Registry, for example, raises 1% of the total dollars raised on Giving Tuesday, it will be awarded 1% - or $1,500 - of the Incentive Fund1,500 means 20 new bone marrow donors included in the Registry and in the world data base. And each donor gives people with leukemia and other blood disorders the second chance for life. 

There will be a 100% match on all recurring donations started on #GivingTuesday up to $200. The initial donation will count towards your total funds raised on the 27th

Please make your donation via the link https://www.globalgiving.org/projects/add-marrow-donors-eliminate-leukemia-worldwide/

Links:

Sep 13, 2018

The Summer Report: Work Continues, No Vacation

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!

Links:

 
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