January 1, 2009

Here's to new beginnings in 2009.

The seventh and last principle of Kwanzaa is faith. People turn to others for comfort, support or help, hoping another person will hear them and help them. Sometimes people just have faith that their circumstances will change for the better.

Emru knew that he might not find a match, but he hoped for the best. He put his faith in his family, his friends, and many other people, including complete strangers. Every day thousands of people turn to the bone marrow registry in the hope that someone will be there who can and is willing to help them. He hoped someone would register and then be willing to donate to him, but he knew that each person who got registered was giving hope to each person (and all the people who cared about that person). He had faith that good was being done and held out a belief that things would likely turn out positively for him, and if not, someone else. It was a great day when he found out he had a match.

I remember a phone call I had with Emru that ended in tears for both us. I gave him a picture of him dressed as one of his favourite heroes, and he said he knew he was going to get the transplant and beat the leukemia. He was right about the transplant, at least. But his faith got him very far, and mentally he was in a good place when he left us.

Faith is not always rewarded, but it is rarely rewarded without taking some form of action while maintaining an attitude that things will move into a positive place. If you want to believe in something, do so fervently, but make a change, however small, to see it come to fruition.

Faith endures: the struggle continues.

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December 31, 2008

The sixth principle of of Kwanzaa is creativity.

I don't want to make another overly long post, but this was a principle dearly cherished by Emru. His love of animation, comics and writing, film were superlative. His creative energy allowed him to work on so many projects. He also cared a lot about the people behind the art he loved, and forged many friendships with those with a creative spark at every point in his life.

That creativity helped a lot this year to find his match as well. He was touched to his very core (as was I and many others) by the illustrated and photographic images people created as people tried to find ways to help spread the word about Emru and others. Emru's words also expressed what he was going through and he could have chosen to write some very angry words but did not. Friends used their words to help explain why Emru needed help and why others needed help too.

When times were tough, these words, images and other creative expressions were like anchors to reality when everything else seemed unreal.

It reminded us that people cared and had great beauty inside them, and that is what makes life is beautiful.

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December 30, 2008

The fifth principle of Kwanzaa is purpose.

There are many things I can say about this, but this entry is probably the most culturally specific.

One of my concerns this year was that as a community, the African world community has accomplished many achievements on an individual and societal level, but there are still many sobering statistics that show there is work to be done.

The situation with bone marrow donation really cuts to the heart of this matter. Some of us have more mobility, better income, more choices than ever before, but even the most successful black person needing an unrelated donor ends up in the same situation as everyone else like them waiting: their odds suck. They still only have a 60% chance of finding a donor if they live in the States, and around a 20% chance if they live in Canada or the UK.

So for me, the concept of purpose is clear. It is about being able to have the same access to life as anyone else. If people want to solve this problem, they will have to take a hard look at themselves, and decide if they want to make a difference in changing the outcome in this collective struggle. Awareness and registration is a community-building project that will require allies on all fronts, but can only truly be changed from within by the community affected by it.

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December 29, 2008

The fourth day of Kwanzaa celebrates cooperative economics. In Canada, registering is free. In many countries, you need not worry about the cost of registration when you decide to sign up as a potential bone marrow donor. Many people worry about the cost of donation, but the donor does not pay for the donation. Instead, depending on where one lives, the donor, donor's insurance covers it, the medical system, and/or special programs run by the registry to help those in need cover it.

This year, we wrote about ways to register for free in the United States. More than half of the world's donor pool lives in the United States, but it costs money to register. There are still many ways to register for free. If you are in a minority donor pool, you can register for free if you present yourself at a donor centre and funds are available. Also, many blood collection agencies allow people to make two platelet donations in exchange for free registration. Many bone marrow drives offer subsidized registration, which means that registrants pay nothing or less than usual. Online registration with the National Marrow Donor Program in the US can be subsidized if you have been provided a promotional code. Online registration with DKMS Americas is free, but people will be asked if they can make a donation.

In all cases people should pay what they can. Why? Because nothing is ever truly free. When someone registers for free, it means the money has been paid by someone else at some point. Donations gathered at bone marrow drives go toward lab typing costs for another person. When Emru died, we asked for donations to two organizations: The National Marrow Donor Program and The African Caribbean Leukaemia Trust. The funds for the donation to the NMDP will go toward paying for someone to register in the United States. 49% of all matches in the US involve an international recipient or donor, so people are being helped everywhere.

On a community level, the funds for the African Caribbean Leukaemia Trust will go toward covering their costs for their tireless work. Their ultimate initiative is the establishment of a registry for African Caribbean and mixed ethnicity donors.

On a personal level, many people stepped forward to help Emru's appeal. People chipped in to help subsidize flyers, print ads, buttons, and much more. We couldn't have done it on the level we did without you.

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December 28, 2008

The third day of Kwanzaa celebrates collective work and responsibility. Some members of the black community call each other "brother" and "sister". We need to reassert this effort to create the notion that what happens to one person affects all of us. The fact of the matter is that the most likely match for a bone marrow donor is a patient of the same or similar ethnicity. If patients of African descent are going to find unrelated donors, then people with a similar genetic story need to make themselves available. Right now, 50-60% of Africans in the United States can find an unrelated donor. In Canada and the UK, this number is around 20%. While there are many allies in communities of all ethnic backgrounds, if people of African descent do not register as donors, these same people do not find donors. It's that easy.

Emru had leukemia, but a host of other diseases were treated with this therapy. When I found out that severe cases of sickle cell anemia in minors is one of the diseases treated, realizing that these patients are 95% of African descent, I understood people really need to band together.

Also, when Emru first found out he needed an unrelated donor, at the beginning many people who did not know me well said this only matters because a relative or close friend is sick. I beg to differ. It only appears on people's radar when someone gets sick, because information about donation doesn't get out fast enough. I have a huge admiration for people who didn't even know Emru's name, who immediately asked, "What can I do"? When I thanked one woman for taking the time to speak with me on the telephone, she merely said, "Of course! We are all family".

Different communities gathered to help as many people as possible, one person at a time. Each new person created a support network with much more outreach potential than everyone separately. Each person has their role to play: A person can get informed, tell others, and, if eligible get registered.

Since I was trying to release information, I felt it was my responsibility to make sure that my information was as accurate as possible. I owed it not just to my brother, but the other people affected by this issue. As I began to separate fact from fiction, and also get a grasp of the dearth of donors for patients waiting for unrelated donors, especially in severely underrepresented groups, I got into action, and asked anyone who would help to join me.

In some cases, I was the one joining them. There are 500 to 600 active requests for unrelated donors in Canada on any given day, 10 times that amount in the US, and more worldwide. In this group, there were patients, friends, families, and good samaritans who realized they could do something to help, and took it upon themselves to do something.

Beverley De-Gale and Orin Lewis formed the African Carribbean Leukaemia Trust and raised the number of African, Caribbean and multiethnic donors in the UK from 550 to 25000 over the last decade.

This was occurring in other communities. Michelle Maykin and Van Le spearheaded Project Michelle and helped increase the registry by over 15 000 people this year, many of Asian descent. The Save Carolyn campaign is largely responsible for 25% of all new registrants in Canada this year being Chinese.

Pat Pedraja made it possible for over 10 000 US residents to get registered over two of his summer vacations. He is in his early teens was named a 2007 CNN Hero and is also organizing to combat the shortage of minorities in the registry. He is being treating over 3.5 years for leukemia but does not need a transplant himself.

(These remarkable numbers are still not enough in both cases.)

Since then other people who begin this type of quest have joined the ranks and now it is my responsibility to keep up my end of the work and and show others the ropes.

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December 27, 2008

The second day of Kwanzaa celebrates self-determination. As a very young child, I struggled to truly understand what this meant. It seemed like one of the hardest concepts to truly grasp. I knew it had something to do with believing in yourself, but I knew that wasn't all it was about it. Confidence was a catalyst, but it was about believing you could do something... and actually doing it on your terms.

No one can accuse Emru or I of not being self-starters (especially Emru, I'm the procrastinator). We try to look for solutions when we or a friend experience a problem. We try to get help, but if we can't find it, we try to figure out what we can do as best as we can, in a way we know how.

Part of this is the understanding that analyzing trends and numbers matter, but as individuals, we are not statistics. We have a higher chance of matching the statistic if we don't begin to take the pains to shape our destinies. I know: easier said than done! But that is an even better reason to get cracking.

For instance, if neither Canadian registry allows personal appeals on their websites, it's about patients creating their own spaces and letting the public know about their need for help to give them a better chance at survival, if not for themselves, for someone like them.

Another example: if neither Canadian registry allows bone marrow drives, its about getting a US registry to come to Canada at personal expense to swab potential matches, or Canadians to go across the border to run bone marrow drives with US friends and volunteers, and work to get drives in Canada, because they won't happen unless people believe that they deserve to be heard on this issue.

Self-determination is about forging your own path and understanding the power of our own voices, and challenge those that try to impose a framework on us that suits them, even though it is not their life in the balance, or that of a loved one. It means patients speaking up for themselves. It means people creating their own campaigns and even organizations. It means rallying to challenge the status quo and ask why registries work they way they do, and making them understand that they are dealing with real people. It's about making potential donors understand that they have the right to make an informed decision about registration. Advocating for the donor also means lobbying for resources for donors that are easy to understand, complete and balanced, and these requests being taken seriously by registries.

This is why organizations like the African Caribbean Leukemia Trust, but also the Asian American Donor Program, Gift of Life Bone Marrow Foundation, and Appeal for South Asian Donors are so important. They work with larger registries, but the provide a specific range of voices to help increase donor education recruitment on their own terms and often represent patients and help their families cope.

We all have a right to be heard, and forge our own destinies.

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December 26, 2008

The first day of Kwanzaa (Umoja) celebrates unity. In terms of the African community around the world, it was easy for Emru and I to see how this was a global problem and and to also understand the effects of our history and various migrations had on the very current issue of the registries around the world and why it made people of African descent - especially from the Caribbean - so very difficult to match.

It made working with an organization like the African Caribbean Leukaemia Trust a no-brainer. They were committed to helping patients from all over the world. They understood your location was not important.

While unity also meant asking people on a fundamental level to redefine who they thought of as family to illustrate the importance of people within a same or similar ethnicity being the most likely match for another person in that group, it also meant rallying people within that group to come together to help others in need. Unity came in the form of ethnocultural community, a life an death matter in terms of finding a matching donor, but also extended to the unity of offline and online social networks.

I am already wired this way, and it is not spontaneous; it is a learned response over so many years that it feels natural. Emru and I like to help, strive to find answers, and believe in the power of numbers and our potential. We are like this because our parents have inculcated us with a strong sense of who we are, ethics, and belief in our potential and that of others. I believe it for myself, my community, or rather my communities, be it ethnic, cultural, geopolitical, virtual, or intentional.

Patients and their families united to help each other, and we all put our heads together with friends and strangers to try to find solutions. I asked my friends to register for the European, South Asian, East Asian and multiethnic patients who I knew were waiting for a lifesaving match. They did the same for the African community. Unity is instantly scalable to a global level.

We both knew there is power in many people doing a little (sometimes a lot to cover those who didn't feel the same way) to do big things and help one another. And it paid off, not just for Emru, but for at least two others who needed matches, and hopefully others will be on the registry in the future for someone else in need.

If you seek to help one, you help everyone. We are all in this together.

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