November 11, 2009

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 of this disease are children and young adults. 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.

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

40% of Canadian 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 (We could be classified as the largest mixed heritage population in North America). 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.
By The Numbers 2009:

Range to begin effective matching 10000-20000
Optimal number of Black registrants required in Canada 70000-80000

New black registrants in Canada between Oct 2008 and 2009 217
Black registrants in Canada in October 2009 1433

New black registrants in Quebec between October 2008 and 2009 38
Black registrants in Quebec in October 2009 62

By the Numbers 2008

5. The shortage is worldwide.

Donors and recipients can live in different countries. So a donor can come from a rich donor pool like the US. There is a shortage of African-American registrants.

African-American registrants as of March 2009 550 000
Optimal number of African-American registrants required in US 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).

Do you want to see these numbers improve? This is where we have a role to play. Here's a problem you don't have to throw money at. Ask questions. Tell a friend about this information and ask them if they knew about it and would be willing to tell someone else. Use Twitter, Livejournal, Facebook or your blog to get the word out.

You're not of African descent or from the Caribbean? It doesn't matter, you probably know someone who is who you will be helping by making this information public knowledge. If you know me personally, I'd like the same chances as you in life if I needed to depend on the registry. It's that simple. I may never need it, but someone just like me does right now, and many will in the future.

The Extraordinary Moment Sarah Meets Her Lifesaver

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November 10, 2009

1. 70% of people requiring a stem cell transplant need an unrelated donor.

The first choice is a family member, but more people will have to rely on a stranger. On any given day, 16000 people around the world are waiting on a list to find an anonymous bone marrow donor.

2. Register by providing a blood sample in Quebec or the UK, or a cheek swab sample in the rest of Canada or the US.

In the US, UK and most of Canada, you can even fill in your registration online and get a kit sent to your home.
This is a free service in Canada and the UK as well as many other countries. In the US, although there is often a fee associated with lab typing, you can have the costs waived by registering online for free (a new development since Summer 2009) via Be The Match, and there are additional ways to register for free.

3. Donation is safe, fast, and not risky.

You never donate stem cells or bone marrow at risk to your own life. Whatever is donated replenishes itself naturally in the body.

4. There are 2 ways to do it.

70% of people will donate in a process that takes a few hours and is similar to donating blood. For a few days leading up to the extraction process, the donor receives injections to produce additional stem cells in the body.

30% of people will donate by having liquid marrow extracted from within the back of the pelvic bone.

5. Many people cannot find matches.

There are 8 blood types, but for a stem cell match there are several million combinations of possible human leukocyte antigen (HLA) profiles - 150 billion different possibilities in theory.

Even though blood is important, and people who need transplants (in addition to many other people) need donated blood to survive, people with a rare blood type can probably find a match in a room with 100 people of different ethnicities (but the rate will go up in a room where everyone is the same ethnicity). For someone looking for a stem cell match, they may need a stadium of 20000 or 50 stadiums (or more) to find a match. The most likely match within the general population is someone of the same or similar ethnicity. If you are of African descent, it is most likely your match will be, too.

Then they have to hope that person is on the registry.

This is where we can help. We can take what we know and tell others to combat the misinformation about the process, so that people understand how important the need is for donors to come forward and how things really work. Use Livejournal, Facebook, Twitter, MSN or your blog.

Learn more at:
Be The Match (US) www.bethematch.org
OneMatch (Canada) www.onematch.ca
Anthony Nolan Trust (UK) www.anthonynolan.org.uk

Feel free to use the Comments section to ask questions. I will answer them or find someone who can answer them.

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February 20, 2009

If you are in the Ottawa region on Saturday or know someone who is, Black History Ottawa is hosting an event which will also allow you to do the the first portion of registration as a stem cell donor and/or get your questions answered. If you register, you will get cheek swabs sent to your home in an envelope. Swab the inside of your cheeks according to the instructions and send them back.

You will also be able to meet Angela Christopher, former Montrealer, Grenadian, who has acute myeloid leukemia (AML). You may have seen her appeal on the African Caribbean Leukemia Trust (www.aclt.org) website or read about her experiences in The Spectrum, Frontonfrom, Caribbean Calendar, CHUO-FM: "Black on Black", and "Rockers". Angela is a beautiful woman Emru and I connected with when his appeal first went public and she done a lot to influence how people see patients and give them a voice.

Here's the where and when:

Saturday, February 21
Tropical Showcase (Music, Culture, Health)
Ottawa Public Library Main Branch (Auditorium), 120 Metcalfe Street
1 to 4 p.m.
Free Admission
~ Find this event on Facebook ~

An afternoon of music, culture and fashion from Africa and the Caribbean. Health promotion displays on physical activity, nutrition and healthy lifestyles. Information on risks of disease and injury, sickle cell disorder, cancer, diabetes etc. Take the opportunity to check your blood type. Special performances by SIFA choir, Heru drummers and more. A partnership between Ottawa Public Health, Canadian Blood Services, Sickle Cell Disease Parents’ Support Group, and Black History Ottawa. Information: 613-580-6744 Ext. 23923.

Remember, if you are not white in Canada, you have somewhere between a 10-30% chance of finding an unrelated match. Or YOU could be someone's match. If you don't fall within this statistic, you know someone who does.

If you cannot make it, you can register online with OneMatch.

Stem Cell Awareness and the Black Community
How To Register as a Donor in Canada

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November 26, 2008

People have been asking me about the registration process.

Registration is free in Canada. You must be 18-50 to register, but you can donate up until you are 60.
How to register in Quebec

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.onematch.ca
> Learn More
> "Learn" or "Spread the Word"

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 in Canada:

1. Go to www.onematch.ca (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 to determine if you are eligible.

2. 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.

3. Send it back. You're done!

It takes about fifteen 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 Quebec
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
By the Numbers: Still a State of Emergency

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People have been asking me about the registration process.

Registration is free in Quebec. You must be 18-50 to register, but you can donate up until you are 60.

It's just a blood sample to register in Quebec, 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.onematch.ca
> Learn More
> "Learn" or "Spread the Word"

The OneMatch site is much more informative than the current Hema-Quebec website.

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 in Quebec:


1. Go to www.hema-quebec.qc.ca

> Stem Cells menu
> Stem Cells Donor Registry
> How To Join

You can also request a consent form by phone (514-832-5000 ext. 279).

2. Read, fill in the consent form and send it back. (5 to 10 minutes)

Do NOT self-select yourself out if you answer no or yes to a question. Some questions are asked simply for more follow-up.

Send it back by fax (514-832-0266) or email (info AT hema-quebec.qc.ca). If you requested a consent kit, send it back in the postage paid envelope.

3. A representative will call, and set up your appointment.

It is at your convenience, and you get to choose if you provide your sample at a nearby blood drive or go to their offices. If you don't hear from them in ten days, call them back!

4. At your appointment, provide a small sample of blood for typing.

It will take much less blood and less time than a regular blood donation. You're done!

It takes about fifteen 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 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
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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November 3, 2008

The Month of November is National Marrow Awareness Month in the US. Online registration with the NMDP is free.

November 3-9, 2008 is Canadian Stem Cell Awareness Week. Go to the OneMatch site to find out how to Spread The Word.

November 17-23, 2008 is Anthony Nolan Week in the UK. Check the Anthony Nolan Trust media centre for their latest YouTube video.

So let's try and build some awareness: here are 5 important points that you should know about registration and donation.

1. 70% of people requiring a stem cell transplant need an unrelated donor.

The first choice is a family member, but more people will have to rely on a stranger.

2. Register by providing a blood sample in Quebec or the UK, or a cheek swab sample in the rest of Canada or the US.

In the US, UK and most of Canada, you can even fill in your registration online and get a kit sent to your home.

This is a free service in Canada and the UK as well as many other countries. In the US, there are ways to register for free.

3. Donation is safe, fast, and not risky.

You never donate stem cells or bone marrow at risk to your own life. Whatever is donated replenishes itself naturally in the body.

4. There are 2 ways to do it.

70% of people will donate in a process that takes a few hours and is similar to donating blood. For a few days leading up to the extraction process, the donor receives injections to produce additional stem cells in the body.

30% of people will donate by having liquid marrow extracted from within the back of the pelvic bone.

5. Many people cannot find matches.

There are 8 blood types, but for a stem cell match there are several million combinations of possible human leukocyte antigen (HLA) profiles - 150 billion different possibilities in theory.

Even though blood is important, and people who need transplants (in addition to many other people) need donated blood to survive, people with a rare blood type can probably find a match in a room with 100 people of different ethnicity. For someone looking for a stem cell match, they may need a stadium of 20000 or 50 stadiums (or more) to find a match.

Then they have to hope that person is on the registry.

The most likely match within the general population is someone of the same or similar ethnicity.


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

Stem Cell Awareness and the Black Community

By the Numbers: Still a State of Emergency

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