Oct 27, 2016

How to Achieve the Goal

Dear friends,

Thank you very much for your loyalty and support! Your donations help save lives and bring hope for  people fighting leukemia!

Today we present the story written by Youri Ioffe, the founder of the Karelian Registry, for the 2016 Fail Forward contest.  

 

I'm the head of the Karelian Registry of Bone Marrow Donors since its inception in 2001. Over the years, the BMD has had it’s share of good luck, failures, and ups or downs.

Six months after the  creation of the Registry, when the database listed only 200 donors, one of them was a match for the patient. Three years later, when the BMD still had a small number of donors, two consecutive donations happened suddenly. These people were some of the first Russian bone marrow donors.

The Registry took more and more time, so I left my job to float freely. A Charitable Foundation was created in order to attract money. First of all it was necessary to find sources to finance the activities of the organization. I was taught to treat people, and I was good at doing it. But I had no idea how to attract finances. It was completely unknown and incomprehensible to me this activity. In Russia, then and now, there is a very vague idea of who the bone marrow donors  are, why they are needed, why they are "potential" and not "real". People suffer from leukemia many times less than, for example, from heart disease, so they don’t know much about this deadly disease.  All this made my work  very difficult. I had nobody to teach me, therefore I had to learn everything by myself, absorbing information, observing, comparing and getting some bumps and bruises along the way from mistakes and blunders.

The first few years, The Stefan Morsch Foundation  provided financial support to the Registry. The Foundation financed selection and examination of donors and their inclusion in search engines. Our function was to attract new donors and work with them on-site. In 2006, Moscow hosted the largest in Russia donor recruitment campaign with the participation of well-known politicians, journalists and artists. The campaign drew a lot of attention from regular people and so companies throughout Russia provided considerable support for the charities working in this field, including the Karelian Registry of Bone Marrow Donors. Shortly after that a complete failure occurred: The Morsch Foundation refused to conduct  a donor survey for free, and then ceased its aid in selection of donors.

I was counting on the support of the state, the Ministry of Health and colleagues hematologists, but this didn’t happen. For four years I have spent my time and effort to create the Registry, and the result of my hard work  was a database of several thousand unclaimed donors. I had no financial support and unclear prospects. But I found a solution to the problem. In 2006, when it seemed that we are at the dead end, the BMD managed to meet the necessary requirements and became a member of the World Association of Bone Marrow Donors and the International search engine system. After that, we started to receive requests for the donors search; we managed to establish contacts and cooperation with colleagues from Russia and other countries, and we have been engaged in research on motivation to donate. Eventually more and more people and organizations have began to provide financial assistance to the Registry.

It became clear to me that it's the wrong way  - to rely only on continued assistance from the outside. You have to build your own way to reach your goals, relying on your strength, experience, patience and perseverance. Help will come only when people feel that the work you are doing is not short-term, is not random one,  that it is really important for the others and that is why it requires the development and support.

Later there were many failures and breakdowns, and sometimes I wanted to give up, to drop everything and go away. But exactly during such moments something always happened thatwould prove that the chosen path was correct. It could be another request to search for a donor from an organization or a patient, or the sudden  donation to the Registry, which was not expected. There were other significant events, such as the cooperation with a major German register DKMS in 2014, which happened thanks to  the help of Catherine Kiseleva, the head of the public organization of the St. Petersburg "Children and Parents Against Cancer", or meeting  Lena Kotachev and Andrei Varshukov - leaders of donor movement of the Petrozavodsk State University, which gave impetus to attract both new donors and new volunteers.

Moving forward, in spite of everything, - this is the main lesson that I have learned.

Links:

Aug 15, 2016

Donor recruitment for Karelian Registry goes on!

At the draft action at the Railroad Hospital
At the draft action at the Railroad Hospital

This June we carried out 2 more recruiting actions! They took place at Begemot café, at the Petrozavodsk Railroad hospital, and at the local department of state telecom operator (Rostelecom). In total, 75 new donors have been recruited. One of the actions was carried out on June, 25th – the birthday of Petrozavodsk. As usual, our local partners supported us by providing small gifts for the new donors: this time every newcomer got a ball pen, a piece of strudel, and a sweet vitamin bar.

 

We are glad to state that many of the new donors are young people; some of them have just turned 18! Fourteen of the new donors are from the northern city of Archangelsk and thus, they enlarge the genetic variety of our donor database.

 

And finally, during the last months 3 of our donors appeared fully compatible with the patients, who need marrow transplantation! Thus, we have got another evidence of the efficiency of the chosen strategy. 


We are grateful to all our donators for their generous support and are looking forward to reach our ultimate goal -- grow the marrow donor database and thus be able to save more lives of deadly ill patients!

Draft action poster
Draft action poster
Draft action at the Begemot cafe
Draft action at the Begemot cafe
New donors at the Begemot cafe
New donors at the Begemot cafe
New donors at the Railroad Hospital
New donors at the Railroad Hospital
Popularization of marrow donorship
Popularization of marrow donorship

Links:

May 17, 2016

15 years of charity: let us do it together!

Project Leader is outlining marrow donorship
Project Leader is outlining marrow donorship

Thanks to everyone who doesn't remain indifferent to the mission of our
Registry! Thanks to all our donors for their courage and love for people!
Thanks to all our donators for their understanding and ongoing support.
Without you all our patients wouldn't have a hope for recovery.

So what happened with us during the last 3 months?

Firstly, it turned out that five of our new marrow donors are
HIV-resistant, and it may appear very useful in a hard situation when a
patient with leukemia is also HIV-positive.

Secondly, we took part in GlobalGiving Bonus Day and raised $240. That's
not too much, but we greatly appreciate the help of our donators! Every
sum we gain is used to move towards our goals with maximal efficiency. We
are grateful to GlobalGiving for this chance to reach a wider audience,
find new donators, raise more funds, and attract more marrow donors to the
Registry.

And finally, on April 28th the Karelian Registry celebrated its 15th anniversary!
The day's main action was a charity concert (see a photo below). We are happy
to congratulate all our friends, marrow donors,
and donators. Thank you for staying
with us! During these 15 years we did
much, and much more is to be done.

 

We hope that you, our marrow donors and donators, will continue to change
the world with us! We need your help! We also hope, that our project will
develop and attract more and more indifferent people.

The Registry team is planning a donor draft action
The Registry team is planning a donor draft action
The leader of Petrozavods Univ. donor movement
The leader of Petrozavods Univ. donor movement
The charity concert
The charity concert

Links:

 
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