December 2, 2008

I was interviewed on the DryerBuzz podcast and discussed How Being African American Can Save A Life.



Leave comments about the show online.

The hostess read my brief messages broadcast on Twitter.
Here's how you can find me, her, DryerBuzz, and Heal Emru there.

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December 1, 2008

People have been asking me about the registration process.

The United States offers the most flexibility when it comes to finding a way to join the registry. You can register online, go to a donor center, or attend a bone marrow drive, one of the most effective methods of educating potential donors. You must be 18-60 to register or donate.

Unlike Canada and the UK, most people will pay to register. However, if you attend a subsidized bone marrow drive, your insurance policy covers registration, or you are in a minority donor pool, you may pay less or nothing. You can register online for free with DKMS every day, or get costs waived if you have a special code with the NMDP.

It's just a cheek swab to register, but you should be informed about the methods of donation, should you ever be one of the select group to match another person. To find out more:

Go to www.marrow.org
> FAQs About Joining
> Myths and Facts About Bone Marrow Donation

If you are a busy person, set aside between 15-30 minutes, and read information on the site. Use a timer so you get back to the other things you need to do.

How to register online in the United States:

1. Determine if you can be a donor.

Check your eligibility. If you are not eligible, you can still get involved by telling other people about the importance of the registry and why it is important.

2. (OPTION A) Go to www.marrow.org (10 to 15 minutes)

Fill in the online consent form and questionnaire to order your buccal swab kit online.

The questionnaire takes this amount of time so you can understand the nature of your commitment and make an informed decision. Also you will be asked some basic medical questions and about your ethnic background.

You should have your credit card ready, unless you have obtained a promo code which will let you register for free. It costs $52 to cover lab typing costs. There are methods to pay less or nothing, especially if you are in a group that is underrepresented. Contact a donor centre for details.

2. (OPTION B) Go to www.dkmsamericas.org

Email info AT dksmsamericas.org to order your buccal swab kit online.

You can register for free through DKMS. Please be advised that someone else (usually a private citizen) will cover what you cannot pay for. So if you can afford to pay some or all of the cost, pay what you can.

3. When you receive the swab kit at home, follow the instructions in the kit. (5 minutes)

The consists of an envelope with instructions, 4 cheek swabs, stickers with a reference ID, and a postage-paid envelope in which to return your samples.

If you are registering via DKMS, you will be sent a registration form that you must include with the kit, and if you can pay for a part of your lab typing, you should include a donation.

4. Send it back. You're done!

It takes about fifteen to twenty working days to get HLA-typed. Keep your address information up to date whenever you move so you can be found if you are ever needed.

You could be contacted in two months, ten years, maybe never. But if you match someone, you may be able to save someone's life by donating 2 to 5% of the stems cells in your circulating blood or bone marrow.

How To Register in Canada
How To Register in Quebec

Stem Cell Awareness - Why is it important to everyone?
Stem Cell Awareness and the Black community
By the Numbers: Still a State of Emergency

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November 23, 2008

1. The most likely match is someone of the same or similar ethnicity

95% of people with sickle cell anemia are of African descent. Currently the only people who get transplants for severe cases are young people. Black people of all ages with diseases like leukemia, lymphoma and aplastic anemia deserve the same chance at a transplant, often the best chance for survival if it is proposed.
Doreene meets Daniel, who she donated to even though they live in different continents. This is a still from their first meeting.

2. 75% of European-Canadians find an unrelated match. Only 10-30% of "anybody else" find an unrelated match.

40% of patients who need a transplant are minorities, but as registrants they only represent 13%.

3. Due to genetic variance, 1 in 500 Europeans need to be on the registry, but 1 in 10 Africans should be on the registry worldwide.

Due to the history of our migrations, there is more genetic diversity among people who identify themselves as black, African, African-American -Canadian -Caribbean. Caribbean people are among some of the hardest to type in the world, as are people of mixed ethnicity.

4. There aren't enough of us in the Canadian registry.

0.5% of the entire registry is classified as black and less than 0.2% is classified as multiethnic. (Under 2000 people - we need almost 80000 more.)

5. The shortage is worldwide.

Donors and recipients can live in different countries. In the US, 515 000 who selected African-American are registered in the US and this is a shortage. The number should be about 4 million.

A search can be international if no one is found in North America, but there are not enough people of African descent registered in the world. There are no registries in the Caribbean or Africa (except South Africa).

People who are sick who live in countries without a registry can still benefit from an unrelated donor registered somewhere else.

Can you cut and paste this note and post it to your blog or Facebook profile or a relevant user forum? Find 5 people to discuss this with face-to-face.

You have your brother, sister, cousin, significant other, parents, children, colleagues, fellow students, good friend, hairdresser, local community businessman, pastor and others to choose from.

If you have registered, let people know!

Please let me know what you think.

How To Register in Quebec
How To Register in Canada
How To Register Online in the United States

Stem Cell Awareness - Why is it important to everyone?
By the Numbers: Still a State of Emergency

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November 18, 2008

It's doubtless that more people know about stem cell donation now and also learned that the most likely match is someone of the same or a similar ethnicity. But many people still aren't aware. It's just that these things take time.

Many people also think that hundreds and even thousands came forward in the Canadian black community to register when they heard of Emru's need and that of others. Before you read onward I want you to figure out a realistic number of people who came forward in Quebec and Canada in the Black community since February 1 and write it down on a piece of paper. Now keep reading.

First some population statistics:

Black people in Canada
approximately 800 000

Black people in Quebec alone
approximately 200 000

Black people in the greater Toronto area alone
approximately 345 000

This data was received on November 12th, 2008, directly from OneMatch and Hema Quebec. Here are the numbers from when we started this appeal, February 2008, and at the end of October 2008.

NOTE: I overreported this number as being 1633 black potential donors in Canada as of March 31, and I am taking steps to address this. It would help if OneMatch or Hema Quebec made the simple effort to publish more solid numbers on their website.

Black people who should be on the Canadian registry to create high rate of matching
approximately 80 000

Black registrants in Canada on Feb 1, 2008
1094*

Black registrants in Canada in October 2008
1226

New black registrants in Canada between February and October
132

Black registrants in Quebec on Feb 1
Less than 10

New black registrants in Quebec between February and October
24

Tell me what you really think, as long as it's constructive. Because if you sincerely believe the statement that nothing can be done to rectify this you are right and part of the problem. If you don't believe it, you are right and can make a real change.

The people who registered, or tried and found out they were ineligible have my eternal gratitude. Those who spread the word are equally important. You have my thanks.

But we must consider how we are going to operate in the long term... and keep going.

Create your own note and cut and paste this information if you want others to know. You can also blog about it or discuss it face-to-face with someone you know.

How To Register As A Donor In Quebec
How To Register As A Donor In Canada
How To Register Online As A Donor In The United States

Stem Cell Awareness - Why is it important to everyone?
Stem Cell Awareness and the Black community

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October 16, 2008

If you know anyone in England or have friends who do, regardless of background, please let them know about this registration drive occurring on Saturday. It only takes a small blood sample in the UK, and actual donation should you ever match someone is neither risky nor dangerous. Over 70% of people need to rely on a stranger likely of the same or similar ethnicity.

REGISTRATION DRIVE

Saturday, October 18, 2008
11:00am - 4:30pm
Barclays Bank
126 Station Road HA8 7RY
London, United Kingdom

Facebook event (with directions)

It doesn't take much time to register and requires a teaspoon of blood. That's it. If you match, you will be guided every step of the way. The ACLT's current campaign is Heroes Wanted. You don't have to run into a burning building or have superpowers to be a hero. Just a willingness to help.

ABOUT THE AFRICAN CARIBBEAN LEUKEMIA TRUST

In early March, I learned about a young man named Daniel De-Gale and an organization named the African Caribbean Leukemia Trust.

I found them on Facebook and Youtube. I was immediately gripped by the dire numbers of available Caribbean donors in the UK, and amazed that a small group of volunteers worked hard to raise the number from 550 potential donors to 25000 in a little over a decade.

The ACLT has been instrumental in getting the word out about the issue, and also posted Emru's appeal. Since our first contact, Daniel's mother Beverley has been a huge support, and has followed Emru's story every step of the way, as well as being a part of it. They have posted the appeal of other people I have mentioned before: Carolyn Tam, Angela Christopher, Yvette Gate, the late Helen Ross, and Graham Barnell.


ABOUT DANIEL DE-GALE

The ACLT began because Daniel fell ill as a boy and needed a bone marrow transplant. His family found out there were not enough people registered and sprang into action. They have not stopped since.

A willing donor was found in the US and saved Daniel's life. Check out this video of Daniel meeting his donor, Doreene.

His parents formed the ACLT and encouraged that amazing number of potential donors even though more are needed and have facilitated 20 matches for ethnic minority recipients, including people of mixed ethnic descent, who are even less likely to find a match.

Last week, young Daniel passed away at age 21, due to reasons not related to the cancer. Just days before he had given a speech asking people to continue signing up as potential donors.

When I did not know what to do, and was losing hope, Daniel wrote me and got me in touch with his mom. He told me that there was a light at the end of the tunnel and to stay the course. I never got to thank him in person for this.


WHAT WE CAN DO

Please learn more about the ACLT. And if what you learn moves you to act, consider doing one or more of these things:

- If you would like to offer condolences or just help out the charity, donate in Daniel's name, as per the family's request. If you are in the UK, you can even donate 3 pounds via text message.

- Check out the ACLT website http://www.aclt.org or the YouTube channel acltcharity.

-Tell someone why it is worth it to learn about donation and to tell others.

As always, thank you for caring!

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August 24, 2008


The Notting Hill carnival in the UK is one of the largest Caribbean carnivals in the world and Europe's largest street festival. The African Caribbean Leukemia Trust is the official charity for the second year in a row. Through their tireless efforts, they have assisted in over a dozen stem cell donor matches, and have increased the number of potential donors who fit this profile in the UK from 550 to 25000 people in a little over a decade.

On Sunday 24th and Monday 25th August more than 1.5 million revellers are expected to watch the thousands of artists perform. Additionally they will all have the opportunity to take 30 minutes to register as potential life savers at the ACLT registration drive, by completing an application form to join the British Bone Marrow Registry which is administered by the National Blood Service (NBS).

Check out ITV Local’s Notting Hill Carnival Channel 2008 (Official Online Media Partners to the Notting Hill Carnival) http://info.itvlocal.com/acltmain.shtml

Seven-year-old Dean Sheikh and his family will be present at the clinics encourage people to sign up. His family are Pakistani and they are hoping more South Asian donors will come forward.

The ACLT helped to spread the word of Emru's need for a donor, and I can personally attest to the determination and commitment of this charity.

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May 26, 2008

Three clinics in the UK, courtesy of the ACLT (African Carribean Leukemia Trust). Don't let the name fool you—while the ACLT wants more minorities to register, they will happily register anyone who shows up. Times and places:
Saturday 14th June 2008

12.00 noon -5pm
Lewisham Fire station
249 Lewisham High Street
London
SE13 6NH

Sunday 6th July 2008

12.00 noon -5pm
Britannia Hotel Nottingham
St James St
Nottingham
NG1 6VN

Sunday 13th July 2008

5pm-9pm
School of Oriental and African Studies
University of London
Thornhaugh St
Russell Square
London
WC1H 0XG

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May 19, 2008

You'll notice that when we talk about how tissue types affect bone marrow compatibility, we always use the word "ethnicity" rather than "race." The reason is simple: race is a social construct, and has little to do with science. The concept of race is purely intended to classify people; for example, terms like mulatto, quadroon and octoroon were meant to describe varying mixtures of blacks and whites, though the one-drop rule was a more absolute method of determining if someone wasn't white.

This idea of race has led to some interesting discussions in the last few months, as some friends and acquaintance have said, in a nutshell, "I wish I could help you, but since you're black and I'm white, we won't match." Even ignoring the fallacy of the conclusion (there's always a possibility of matching, as we recently mentioned) the statement itself is built around the concept of race as a rigid category that can be determined solely by appearances.

I could give a number of personal examples as to why this notion is inaccurate; instead, I'll point to this article from the Daily Mail, in which a Brit who anyone would consider white was determined to be directly descended from Maharajah Duleep Singh, the last king of the Sikhs. How was this discovered? Through a blood sample—one of the two ways in which compatibility is determined for bone marrow donations.

I've said it before, and I'll say it again: "race," what we determine from the outside, doesn't matter here. When it comes to science, it's all a matter of genetics, what's on the inside.

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April 11, 2008

I was interviewed by Maya Johnson a while back for Montreal Community Contact, a local biweekly that serves the black and Caribbean communities. The article, which is now online, highlights the need for more minorities registering as potential donors.

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March 31, 2008

From the moment we started discussing how we were going to get the word out about registering for bone marrow donations, the question of ethnicity—or rather its importance—came up. The seemingly contradictory message is this: ethnicity is important in matching, but it's not important in donating.

Getting past any issues of genetics, it's all a matter of odds. Let's say I have two friends, one a black Trinidadian and one a white Irishman. Who should donate to help me?

The answer is both. The odds favour the Trinidadian because of our similar ancestry, but the key word is favour. The Irishman might still match me; it's just that the odds are lower. Think of it this way: When you buy a lottery ticket, you have better odds of winning $100 than of winning $1,000,000. The odds favour the $100 winnings (if any), but you're still shooting for that jackpot.

So in one sense ethnicity means nothing. If you're going to donate, just do it no matter who you are. On the other hand, ethnicity means a lot. Because the bone marrow registries are overwhelmingly Caucasian, it means people of other ethnicities—particularly if they're mixed—have a much lower statistical chance of finding a match. Therefore it's also important for ethnic minorities to turn out and donate, as it bolsters the overall well-being of their communities.

A few more recent news stories highlight the issue. KIRO-TV reports on Greg Hachey, who is half-Filipino, half-Caucasian; Thaindian News mentions that the odds of a South Asian finding a match in the National Marrow Donor Program (NMDP) is 1 in 20,000 versus 1 in 15 for Caucasians; and a Philly.com article about the late saxophonist Michael Brecker (whose music I was listening to last night, by coincidence) who was personally affected by the under-representation of Jews and eventually promoted drives to help blacks.

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March 27, 2008

Bit of a media circus yesterday, in the best sense of the term. There was a writeup on me on page A6 of today's Montreal Gazette that highlights the need for minority donors. Because of our particular focus during the interview, I let one thing slip by me that I usually try to catch:
Townsend has taken his battle against cancer public to raise awareness for the need of Quebecers, and particularly people of Caribbean descent, to register as bone marrow donors.
Actually, the need is there for blacks from anywhere (in my particular case) and all visible minorities as well.

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March 22, 2008

Two articles I came across today both highlight another aspect of the need for minority donors: for people of mixed heritage. (This is a concern for me as well, as our son is half Greek.)

Kent News features an article on a child who is part Maltese, and Vandalia Drummer News talks about a football player whose mother is of Dutch and Indonesian heritage.

This, incidentally, is one of the reasons why we encourage people of all backgrounds to register: if you look at the photos of either of these people, you might guess as to their background, and you'd probably be wrong. And you'd probably never guess from my photos that I have Scots blood. Looks are deceiving.

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March 16, 2008

Two new articles here on the need for minority donors. The Boston Globe reports on a recent marrow drive that was held in honour of Pulitzer prize-winning reporter Arthur Jones. Jones, who was black, died of chronic lymphocytic leukemia (CLL) in October 2006. The Khaleej Times writes about the pressing need for a registry in the Middle East, as fewer than 3% of the donors in the international registries can offer a match.

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