How Being African American Can Save A Life
December 1, 2008
Tamu and Emru Townsend had a lot in common growing up and even as adults. They shared a passion for animation, comics, video games, African history and art, and technology. Last December, as they were wrapping up an annual charity auction for Emru’s website, fps, Emru succumbed to what had been a mystery ailment, and was finally diagnosed with acute myelogenous leukemia.
Emru needed a bone marrow transplant. What he did not have in common with Tamu was a compatible profile for her to be a suitable match for him. 75% of patients who require a donor will not have a sibling match.
As Tamu began to research stem cell donation and registration, she quickly learned that information was not getting out fast enough about unrelated donors. Myths were winning the information war. There was a serious shortage of donors worldwide of African descent, including in North America. What began as a quest for Emru’s donor, quickly turned into an appeal for black registrants to come forward to save the life of any current or future patient, as they both knew that Emru’s own chances of finding an unrelated donor under the current constraints were slim.
Tamu created a Facebook group, Help Emru Find a Bone Marrow Donor, and 700 people joined during the first week. Emru registered www.healemru.com shortly thereafter, and began blogging his experiences in addition to the private mailing list he had been running for over 250 friends and family members. He also posted about how other patients and donors were faring, and updated a calendar of bone marrow drives in the United States and England, an event he could not organize in Canada. They had to depend on face-to-face interaction and the Internet to get the word out.
Emru beat the odds and found a match among 12 million anonymous donors on the worldwide registry in June and received a transplant in September. Even after Emru found a match, he and Tamu continued to campaign for more donors, especially those in minority donor pools. The donation he received engrafted successfully (the donor’s stem cells began producing healthy blood cells in his body), but his cancer proved to be too resistant, and he finally passed away on November 11, leaving behind a wife and son.
Since the awareness-raising campaign began, 2 other matches have been found as a result of the Heal Emru campaign, but the overall problem of severe shortages in minority donor pools needs to be addressed with visibility, education and action.
Tamu Townsend joins DryerBuzz & Company live & podcast Tuesday, December 2, 2008 at 8AM ET. Call into the discussion 646-652-2642.
Twitter: healemru
Email: info@healemru
Flickr: www.flickr.com/photos/emru
Blog: www.healemru.com/updates.php
FACEBOOK
Heal Emru Page: http://www.facebook.com/pages/Heal-Emru/19717575508
ACLT [African Caribbean Leukaemia Trust] Group: http://www.facebook.com/group.php?gid=2393004954
Facebook Causes:
National Marrow Donor Program
ACLT [African Caribbean Leukaemia Trust]
YOUTUBE
http://www.youtube.com/healemru
http://www.youtube.com/acltcharity
WEBSITES
Appeal: www.healemru.com; www.aclt.org
US Registries: National Marrow Donor Program: www.marrow.org, DKMS Americas: www.dkmsamericas.org
Canada Registries: OneMatch: www.onematch.ca; Hema-Quebec: www.hema-quebec.qc.ca
UK Registry: Anthony Nolan Trust: www.anthonynolan.org.uk
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I think that Tamu’s continued work with African American donors is admirable. I just wish that she wasn’t just directed at the African Americans. I’ve met with a lot of people whom haven’t been able to find a donor, or they find one too late. This problem isn’t just limited to the African Americans, but everyone. This is a world wide problem.
Before I found out I had leukemia, I didn’t even know a person could donate something like bone marrow. 23 years of living in this world and I never knew. People don’t talk about it. We’re solicited for money, time, blood, organs, but not bone marrow. We hear every October about Pink Ribbons and Breast Cancer. But with breast cancer, we donate money. Pink tools, pink pots and pans, pink ribbon bagels, and foods participates in this search, among others. We hear about lung cancer in association with cigarettes. But what about other cancers? What about other diseases? Other health problems? The knowledge of health problems aren’t covered.
In my health care class, back in middle school and high school, we discussed things like cpr, sex, teen pregnancy, birth control, and condoms. We did not discuss how we could potentially save lives by donating something like bone marrow. Or maybe a piece of our liver.
In high school, they ask if we want to donate blood. But when I tried, I didn’t weigh enough. I weighed 100lbs. When I was recovering after my transplant, I weighed 85lbs and they took 15-20 vials of blood a day. I had to have many, many blood transfusions.
It’s this kind of thing that limits our ability to help other people with health problems. When I was younger, I wanted to help people with a kind of desperation. I would have loved to donate something like bone marrow. Now, I don’t know if I’ll ever be able to donate, because if I did, could I potentially give them a higher risk of leukemia, even though I’ve been in remission for a year? What about after 5 years? 10? Will I ever be able to help people with donations from my body?
I don’t know. And I’m not really sure where to look to find out. I don’t even know what’s available to donate. I don’t want to wonder. I don’t want other people to wonder. I want people to know. I think this should be a world wide thing.
Jessica,
I’m really surprised that you are disturbed by my focus on African-Americans. You have been monitoring my emails and messages for a long time, and you know everyone matters to me. I have been getting people of every background to register, wherever they can.
You’ve seen me campaign for Carolyn Tam, who is Chinese, for Project Michelle’s quest to get more donors, for the African Caribbean Leukaemia Trust, for Appeal for South Asian Donors, for the registries in general, and for individuals of all backgrounds.
The shortages are especially severe in certain ethnic communities, including mine. I have never turned away from anyone of any background from registering. You have seen the efforts I have made to take to inform everyone about registration and the different patients that are waiting.
But I REFUSE to be silent about an issue that directly effects my community due to a higher difficulty in getting a match due to a wider genetic variance, and lack of understanding about the donation process.
You had more than one match in the system and a brother who matched. You still have a very difficult journey, but your situation plays out a lot less for many people ESPECIALLY for African-Americans, who rarely have matches in the system, so why not focus on it?
Guess what? Because my campaign is so general, there have been more people who are not black who have registered due to my efforts, than those that are. So I am not sure what you are saying about this being my sole focus. It is an IMPORTANT focus.
I will not apologize for talking about an issue that impacts the people around me, due to their ethnicity being at the heart of the issue. I also try to encourage more men and young people to sign up, because they are also needed and in shorter supply. One of the issues noticed by campaigners of this type, is that, for example, Chinese registrants pay more attention when a Chinese person says they need help and so on. This is not just due to people only caring about themselves, but not understanding the intricacies of matching, that there is a wider genetic variance among certain populations making it harder to find a match, that many people are cut off in the donor pool (for example, no registries in the Caribbean), and additional layers that must be explained to the people who are similar to me who may be DIRECTLY affected.
Contact me anytime if you want to discuss this.
As much as I strongly disagree with your initial comment, I strongly agree with your assessment that lack of education on the subject is a huge problem. It takes perhaps an hour to teach the basics of this issue to a class of high school students, and they can be given resources to learn more on their own.
In the UK, 40000 pounds was awarded to the Anthony Nolan Trust to fund a pilot project to teach blood and bone marrow donation awareness in schools. This is part of the dying wish of Adrian Sudbury, who used his last months to teach others when he no longer could use it to help himself.
We could do this in North America. It is achievable and easy to implement with a bit of forethought and focuses intention. For now, we don’t have this, so we will have to depend on each other.
Hey. I didn’t mean it like that. I just mean that I think that it should reach more people. You’ve inspired me. I’m trying to find more information on other problems that could be helped by donations like bone marrow so I can make several packets. I’m wanting to go to schools and speak to students about this and if they are interested, they can have a packet to look over, an easier way of finding out how to help.
I think it’s wonderful that you’ve done all that you have. I just think that I can help you spread more information about this to others. I want others to see what you’re doing, what I’m going to do, and do it too. I want to help make it grow and I can’t wait to see where we can take this.
When I saw your article, and read it, I started thinking about some of the people that I met, and lost, when they couldn’t find donors. Some were black, some were white, some mexican. And I don’t know how much of your message is reaching people here. Most people don’t find a donor because the registry is lacking in people. Especially with crazy blood! I’m lucky that my brother was a match because they didn’t think they could find a person in the registry with my blood.
Your article made me decide that I want to help. I want to do more. I need to do more. I want to bring awareness to people, not just about bone marrows, but about other potential ways to help save people. Ways that they could See. Sure it’s good to give money to charities, but this would be something more. They would know that they, personally, saved a life. And I think that would be a wonderful feeling.
Hi Jessica,
That’s a relief. I’ve received a number of criticisms as soon as I bring up ethnicity, like I am not supposed to mention it, although it is so critical. Like I said, I was surprised, because you’re such an inclusive and open person.
By the way, antigens in blood can affect a person’s ability to match, just to clarify for everyone else, bone marrow profiles (several million, theoretically 150 billion possibilities) are much more varied than blood types (8 types). A patient can have a different blood type from a recipient.
I admire your willingness to educate others (although you need to take care of yourself, too!) and of course, I’ll do what I can to help you. Make sure you get as much help as you can! Work with your hospital’s communications office, the school board, and maybe medical writers (contact the American Medical Writers Association – AMWA).
At first I was alarmed by Jessica’s comments knowing, from having followed Emru’s journey on healemru.com, that the website covered stories from people of different ethnic groups, bone marrow drives in other countries and a vast network. Glad to see the above exchange sorted it out
Great DryerBuzz interview and a lot of information imparted. Mention made of a follow up. Good.