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 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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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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October 20, 2008

Important message from Laurent Paul Ménard, director of external communications from Hema-Quebec:

Hema-Québec web site will go through a major redesign process and we expect to be online with a new version in early spring 2009.

We are currently addressing and auditing existing contents and gathering information. Your suggestions will be gladly welcomed.

Please send your comments/suggestions at : Laurent-Paul.Menard AT hema-quebec.qc.ca

Regards,

Laurent Paul Ménard
Directeur des communications externes,
Héma-Québec

Please take a look at the Hema-Quebec website. By the end of your search for information, did you feel any of these four messages came across clearly?

- Over 70% of people will not find a family match and will need a stranger
- Donation is not risky, extremely painful or dangerous, and there are two methods of donation
- You don't need to donate stem cells in your marrow or circulating blood to register. It is just a blood sample
- It is difficult to find a match and many people do not find a match, moreso if they are from an underrepresented ethnicity, because their likely match is usually of the same or similar ethnicity

Here are some more suggestions for what you could address in your email feedback. Remember to be polite!

-Did you find information that let you know what to expect during the registration process?
-Could you easily find the form you needed to register as a potential donor?
-Did you find information that let you understand the donation process?

SOME THINGS TO TRY:

- Try to find out which blood collection drives include a table for information on the stem cell registry.

- Click and compare: Go to www.onematch.ca or www.univie.ca and look at their frequently asked questions. Then look at www.hema-quebec.qc.ca and look at their stem cell registry FAQ. Which one is clearer? You can also try www.anthonynolan.org.uk or www.marrow.org

- Do you still need to know why it is important to donate blood, or why people need a transplant after your website visit? Tell HQ what you could not find, and where you would have looked.

All information you provide on any aspect of the entire website will be taken into consideration - as long as you do it by the end of the month!

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September 26, 2008

OneMatch, Canada's stem cell registry, is hosting an on-site swabbing event on Sunday. At least 200 people need to register for this to be considered a success. There will be on-site staff to answer questions and educate the public.

Date:
Sunday, September 28, 2008
Time:
11:00am - 3:00pm
Location:
The Tagore Centre
Street:
140 Millwick Drive
City/Town:
Toronto, ON

Here are my suggestions to help make this event a success:
  • Already on the registry? Tell people you registered!
  • Too old to register or otherwise ineligible? Get more informed on the issue and spread the word!
  • Thinking of registering? Get the proper documentation to dispel myths and talk to your friends and family. Staff from OneMatch will be on-site at Sunday's event. Ask lots of questions and get the facts! If you want to swab right away, you'll be in the right place!
  • Are you a photographer, videographer or sketch artist? Record this event and then show people your work.

View Larger Map

What does it all mean?

I've gone on the record saying that I am in disbelief that Canada does not run bone marrow drives. If you have ever seen a drive recently in Canada, it is a US organization, such as Gift of Life, that runs drives, and anyone who gets swabbed is placed on the US registry. Further complicating issues, Quebec has a different method of sample collection, so many people figure they will wait until they can swab, and that opportunity may not occur again in a timely fashion, as it is uncertain when an out-of-country drive will next be organized in a given city.

This event could be a critical turning point in reaching more Canadians on this issue. If you live in Toronto, tell your friends, and make sure to encourage them to tell others about it.

Join the Facebook event and invite friends
Appeal for South Asian Donors

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June 30, 2008

For people who only know Emru through this blog, he and I live in Montreal, Quebec, Canada.

Today, another Quebec native, Diane Hébert, passed away. She was the first recipient in the province of both a heart and lung transplant. I remember in my early teens seeing her face on the television and in the papers. She made news with her story, and went on lead a normal life, write an autobiography, Second Chance, set up a foundation promoting organ and tissue donation that also supports patients awaiting donation (including those awaiting bone marrow), and live for 23 more years, leaving this world at 51.

I panicked last month when I noticed my organ donor sticker on the back of my Medicare card had worn down so it was hardly readable. My new sticker arrived in the mail last week with my new card, to my relief.

Her efforts made organ donation acceptable in Canada, and very much so in Quebec, which has the highest number of organ donors per capita. People became aware that lives could be changed for the better with their gift.

While bone marrow and stem cell donations are only provided by living donors and one must consent to be added to a different registry, her efforts had an impact on how people feel about helping one another in this manner and made them realize how meaningful it is to give someone a better chance of survival even in the direst of circumstances.

In the title, I include Diane Hébert's transplantation year as her "birth date." It marks the beginning of her second chance at life.

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June 21, 2008

Emru and I get a lot of questions via email, phone, Facebook, and in person. I will be present on Saturday June 28 and Sunday June 29 to give a brief talk and take part in a question and answer period. This is a great chance to get a lot of information in a very short time and get your concerns addressed.

Saturday June 28
12:00pm -2:00 pm
3:00 pm-5:00 pm

Sunday June 29
3:00 pm-5:00 pm

Concordia University
De Seve Cinema
1400 de Maisonneuve West
Montreal, Quebec
(near Guy-Concordia metro)

Topics to be addressed:

- What are bone marrow, stem cells, and why would someone need a donation
- Myths surrounding bone marrow donation, and the actual donation process
- Why most people requiring a bone marrow transplant will require an unrelated donor
- How to register in Quebec and other regions
- How matching works, why so many people are needed and why ethnic background is a factor
- Shortages in certain donor pools and other issues

You can also add the event on Facebook and send it to your friends.

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June 18, 2008

On June 19, from 2 to 8 p.m. there will be a bone marrow drive in Montreal at the YWHA on Westbury. It is sponsored by Gift of Life to aid two men in the local Jewish community.

Donations are welcome, as the family must pay out of pocket since this is being done by a US registry. You have the privilege of getting swabbed for free, but please try to pay what you can, even if it is only a few dollars, because in the end, someone is paying for it.

Please note that this drive is not sponsored by Hema Quebec, who does not run bone marrow drives. Your name will go onto the National Marrow Donor Program database in the US, but if you are ever found to be a match, they will contact the appropriate registry.

No matter what registry you are on, please remember to keep your address information up to date.

To register any time in Quebec, go to Hema Quebec's website and download their consent form, or call (514) 832-5000 ext 279 and ask for a consent form to be sent directly to you. Read it, fill it in and send it back. You will be contacted to make an appointment at your convenience, where you will provide two vials of blood for typing.

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June 11, 2008


Carolyn Tam and other Chinese patients require new Chinese registrants to add their numbers to the worldwide registry. There are not enough Asian and Pacific Islander registrants.

Carolyn lives in Toronto, Canada, and she is the same position as many - no matches in the registry. Yet. It's up to people to decide that they are going to register or at least continue to spread the word about her.

Bone marrow drives are run by neither the OneMatch Registry nor the Hema-Quebec Stem Cell Registry in Canada. A special arrangement has been made with the Elizabeth Lue Bone Marrow Foundation for the Gift of Life registry, based in the US, to run bone marrow drives north of the border for Carolyn, which will benefit all present and future patients.

June 14: Vancouver

Vancouver Chinatown
S.U.C.C.E.S.S.
28 West Pender Street

Richmond
Buddha's Light International Association
#6680- 8181 Cambie Road

Burnaby
CCM Canada
2nd floor 4533 Kingsborough Street
(Crystal Mall)

June 15: Toronto

Downtown Toronto
UNIVERSITY SETTLEMENT HOUSE
10am - 4pm
23 Grange Road

Scarborough
SCARBOROUGH FINCH YEE HONG CENTRE
10am - 4pm
60 Scottfield Drive

Richmond Hill
RICHMOND HILL CHINESE COMMUNITY CHURCH
1pm - 4pm
9670 Bayview Avenue

Mississauga
MISSISSAUGA YEE HONG CENTRE
10am - 4pm
5510 Mavis Road


Personally, I would love to run more entries with the label "bone marrow drives" and "Canada" in the same sentence. Supporting this drive, regardless of background can send a clear message to Canadian registries that bone marrow drives need to be rethought and reinstated.

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March 25, 2008

A CTV.ca article talks about how easy it is to get on the bone marrow registry via cheek swabs in Canada (except Quebec, where blood samples are used). Just order the kit and do it at home:
With the kit, the DNA is collected by swabbing the inside of your cheek. Four samples are taken from four different areas. The swabs are then put back into the package, and sent to Canadian Blood Services' lab.
It should be mentioned that this is the same system that's used in the United States. Hit up our registries page to order your kit today.

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March 23, 2008

From the Calgary Herald:
The permanent clinic in the Beltline needs donors to come in on Easter Monday, either from 9 a.m. to 1 p.m. or 3:30 p.m. to 8 p.m. You can call 1-888-2-DONATE to get more information or visit www.blood.ca.

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