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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July 24, 2009

Many of you know my birthday is this month. I don't need gifts and usually I ask for nothing. You still don't have to get me anything. For those who feel compelled to get something, these would be the most significant to me:

- A donation in Emru's memory to one of the organizations listed below
- Telling someone how to register as a bone marrow or peripheral stem cell donor

Thanks very much to the many recent "birthday" donors who have already made donations, as well as all the people who have donated to help Emru and in Emru's memory during 2008 ad 2009. Everybody has already done so much. I also I would like to thank my friend Maya, who signed up as a donor. Also, a big congratulations to Sarah, who just met her donor.

Thanks everyone,
Tamu

Here's the list:

ACLT (AFRICAN CARIBBEAN LEUKEMIA TRUST)
I cannot say enough about this charity. ACLT will help anyone in need, but their focus is increasing participation of ethnic minorities and people of mixed ethnicity in blood and bone marrow donation. You can find Emru's appeal on their website here: http://www.aclt.org/index.php/appeals/showappeal/17

- Online directly: http://www.aclt.org/index.php/donate/
- By Mail: Southbridge House, Southbridge Place, Croydon Surrey CR0 4HA

LEUKEMIA AND LYMPHOMA SOCIETY: LIGHT THE NIGHT
Vicky is raising money for the LLS and participating in their walk this Fall. I plan to join her team on my birthday.
If you would like to pledge her, this is the link.

http://my.e2rm.com/personalPage.aspx?SID=2219469

LEUKEMIA AND LYMPHOMA SOCIETY: TEAM IN TRAINING
Donna McGovern is also training to participate in a NYC triathlon as a member of The Leukemia & Lymphoma Society's (LLS) Team In Training. (Our mutual friend Penny was also a good friend of Emru’s.) Donna is completing this event in honour of Emru and for all individuals who are battling blood cancers.

http://pages.teamintraining.org/nyc/nyctri09/dmcgovern

BE THE MATCH (formerly THE MARROW FOUNDATION)
About half of all transplants with a National Marrow Donor Program match involve an international recipient or patient. There is a good chance Emru's donor was from the US.

- Facebook ($550 raised so far :) ): http://apps.facebook.com/causes/birthdays/98666?m=e0bc6388
- My friend Val is also celebrating on the same day, same cause: http://apps.facebook.com/causes/birthdays/98822?m=7acf6425
- Online directly on the Be The Match website: http://marrow.convio.net/site/PageNavigator/Donation_home
- Other ways to give: http://marrow.convio.net/site/PageServer?pagename=Donation_other_giving

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June 24, 2009


This year's two-week Be The Match Marrowthon successfully registered over 21000 people in the United States - all for free!

US donors are usually asked to pay about $52 as a full price. Actually it costs a total of $100 to register each donor, it's just that part is funded by the registry.

However, there are ways to register for very little or for free every day.
  • In the Canada, the UK, and many other countries, registration is always free.
  • If you are in an ethnic group that is difficult to find matches for, go to a donor center and see if they have funds to cover your registration. They understand the extreme level of difficulty finding a donor match and the severe shortages within certain ethnic groups.
  • Be on the lookout for promotional codes being advertised for patients. These promotions are paid for by the patient, friends and family for a certain amount of people to register for free. Usually this person is in a difficult group to match. If you find a code, please be respectful, and only use it if you are in a same or similar ethnic group.
  • In some areas, you can donate platelets twice to offset the cost of becoming a bone marrow donor. Inquire with your local blood donor centre.
Please keep in mind that even if you pay nothing, it still costs a lot for profile typing. If you aren't eligible, or have the extra funds, consider making a donation to the registry. You may help register someone who saves someone else's life but didn't have the money.

Photo courtesy of Save A Life Network

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