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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March 16, 2009

(Click to enlarge.)
Daniel De-Gale, the inspiration for the UK-based charity African Caribbean Leukaemia Trust, was born on March 17. This young man passed away late last year, but he left a lasting legacy and his family and community continue to work to increase the chances that others get more time on this earth to spend with their friends and family with the continued help of people generous to lend their energy to increasing the number of blood and bone marrow donors, especially from an African Caribbean and mixed ethnicity background.

This year the ACLT and the National Blood Service are hosting the first annual Daniel De-Gale Blood Donation Day, to encourage blood donation.

Many people are not eligible to donate blood:
  • If you are not, you or someone you know may require a blood donation one day. No one can predict that they will one day need a blood transfusion on a one-time or regular basis. But when it's needed, you want it to be there.
  • You can still learn about the basic eligibility rules. It's important to dispel myths others have built up. Also eligibility rules can change. I was not eligible to give blood at one point, and I checked the rules a few years later and in my case, they had changed. I was recently told I could not give blood until Dec 24, 2009. This is a temporary deferral, but many people treat a temporary ban, as a permanent one and stop donating. If you have ever been barred from donating, this is a good time to recheck your status.
  • Discuss blood donation with your loved ones. Children and siblings may not consider blood donation unless it is made a part of your immediate family culture. This is a good day to sit down, and have a discussion about blood donation and how it helps people live their lives.
For those eligible to donate blood:
  • Only a very small fraction of the general population donates blood, however it would only take about 5% of the general population to donate blood in many countries to meet the current demand for that region.
  • Your ethnicity matters. While two people from different ethnicities can match each other, rare blood type distributions differ by ethnic group.
  • Genotyping blood donors can decrease the chance of dangerous adverse immune reactions, even more likely to happen with frequent recipients of blood products - cancer patients, sickle cell anemia and thalassemia sufferers. People within the same or similar ethnic group more commonly share certain genotypes in common. Besides the more commonly known blood groups and antigens, even closer matching can create a higher success rate for patients in need.
If you are living in the UK:
  • Consider celebrating this day tomorrow and letting others know about it in your region. If it is a success, the National Blood Service will repeat this event next year, and possibly make it a week long.
If you are living elswhere (like me):
  • The limits on this event are only the ones we choose to impose. There is nothing to stop this day from being celebrated within the Pan-African and Pan-Caribbean community. This is an educational and philanthropic community event that does not have borders. Let's help ourselves.
Last April, my brother had a cake to celebrate his 30th transfusion since the previous December. Before he received his bone marrow transplant, he would not have lived without the kindness of anonymous strangers who decided giving up 20-40 minutes of their time was no big deal in case it might make a profound difference to someone else's.

It did.

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March 6, 2009



You can be the one to help save a life. Jasmina is 6 years old, and looking for a bone marrow donor. She is adopted and black, which means she does not have a family member as a first option, and she is in a donor pool that is severely underrepresented. She is one of thousands of patients every day looking for a donor.

-You can learn more about bone marrow donation. (Start with the facts on the Info tab of the Heal Emru page).

-You can tell others how to help. *** JUST PASS THIS ALONG ***

-If you are eligible you can become a bone marrow donor. You can live in another country- it doesn't matter, as long as there is a registry where you live.

-If you do register, you can tell someone you did.

If you live in New York, there is also a drive tomorrow at PS 41 in NYC.

Hope you can make it! If you can't like me, you can still get registered!

If you can make it, a bone marrow drive is a great place to get questions answered and register easily.

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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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December 30, 2008

The fifth principle of Kwanzaa is purpose.

There are many things I can say about this, but this entry is probably the most culturally specific.

One of my concerns this year was that as a community, the African world community has accomplished many achievements on an individual and societal level, but there are still many sobering statistics that show there is work to be done.

The situation with bone marrow donation really cuts to the heart of this matter. Some of us have more mobility, better income, more choices than ever before, but even the most successful black person needing an unrelated donor ends up in the same situation as everyone else like them waiting: their odds suck. They still only have a 60% chance of finding a donor if they live in the States, and around a 20% chance if they live in Canada or the UK.

So for me, the concept of purpose is clear. It is about being able to have the same access to life as anyone else. If people want to solve this problem, they will have to take a hard look at themselves, and decide if they want to make a difference in changing the outcome in this collective struggle. Awareness and registration is a community-building project that will require allies on all fronts, but can only truly be changed from within by the community affected by it.

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December 27, 2008

The second day of Kwanzaa celebrates self-determination. As a very young child, I struggled to truly understand what this meant. It seemed like one of the hardest concepts to truly grasp. I knew it had something to do with believing in yourself, but I knew that wasn't all it was about it. Confidence was a catalyst, but it was about believing you could do something... and actually doing it on your terms.

No one can accuse Emru or I of not being self-starters (especially Emru, I'm the procrastinator). We try to look for solutions when we or a friend experience a problem. We try to get help, but if we can't find it, we try to figure out what we can do as best as we can, in a way we know how.

Part of this is the understanding that analyzing trends and numbers matter, but as individuals, we are not statistics. We have a higher chance of matching the statistic if we don't begin to take the pains to shape our destinies. I know: easier said than done! But that is an even better reason to get cracking.

For instance, if neither Canadian registry allows personal appeals on their websites, it's about patients creating their own spaces and letting the public know about their need for help to give them a better chance at survival, if not for themselves, for someone like them.

Another example: if neither Canadian registry allows bone marrow drives, its about getting a US registry to come to Canada at personal expense to swab potential matches, or Canadians to go across the border to run bone marrow drives with US friends and volunteers, and work to get drives in Canada, because they won't happen unless people believe that they deserve to be heard on this issue.

Self-determination is about forging your own path and understanding the power of our own voices, and challenge those that try to impose a framework on us that suits them, even though it is not their life in the balance, or that of a loved one. It means patients speaking up for themselves. It means people creating their own campaigns and even organizations. It means rallying to challenge the status quo and ask why registries work they way they do, and making them understand that they are dealing with real people. It's about making potential donors understand that they have the right to make an informed decision about registration. Advocating for the donor also means lobbying for resources for donors that are easy to understand, complete and balanced, and these requests being taken seriously by registries.

This is why organizations like the African Caribbean Leukemia Trust, but also the Asian American Donor Program, Gift of Life Bone Marrow Foundation, and Appeal for South Asian Donors are so important. They work with larger registries, but the provide a specific range of voices to help increase donor education recruitment on their own terms and often represent patients and help their families cope.

We all have a right to be heard, and forge our own destinies.

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December 26, 2008

The first day of Kwanzaa (Umoja) celebrates unity. In terms of the African community around the world, it was easy for Emru and I to see how this was a global problem and and to also understand the effects of our history and various migrations had on the very current issue of the registries around the world and why it made people of African descent - especially from the Caribbean - so very difficult to match.

It made working with an organization like the African Caribbean Leukaemia Trust a no-brainer. They were committed to helping patients from all over the world. They understood your location was not important.

While unity also meant asking people on a fundamental level to redefine who they thought of as family to illustrate the importance of people within a same or similar ethnicity being the most likely match for another person in that group, it also meant rallying people within that group to come together to help others in need. Unity came in the form of ethnocultural community, a life an death matter in terms of finding a matching donor, but also extended to the unity of offline and online social networks.

I am already wired this way, and it is not spontaneous; it is a learned response over so many years that it feels natural. Emru and I like to help, strive to find answers, and believe in the power of numbers and our potential. We are like this because our parents have inculcated us with a strong sense of who we are, ethics, and belief in our potential and that of others. I believe it for myself, my community, or rather my communities, be it ethnic, cultural, geopolitical, virtual, or intentional.

Patients and their families united to help each other, and we all put our heads together with friends and strangers to try to find solutions. I asked my friends to register for the European, South Asian, East Asian and multiethnic patients who I knew were waiting for a lifesaving match. They did the same for the African community. Unity is instantly scalable to a global level.

We both knew there is power in many people doing a little (sometimes a lot to cover those who didn't feel the same way) to do big things and help one another. And it paid off, not just for Emru, but for at least two others who needed matches, and hopefully others will be on the registry in the future for someone else in need.

If you seek to help one, you help everyone. We are all in this together.

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December 25, 2008

Happy holidays, everyone.

Vicky, Max, Patsy, Beverly and I returned to Montreal early yesterday morning. After driving from Montreal, to NYC, to Lake Worth (near Ft. Lauderdale), we hopped on a plane to Jamaica. We spent six days in Ocho Rios. Our friend Kelly and I flew down to Ft. Lauderdale on the 15th and were present so our whole crew could help Max take his first plane ride back since he was 2. It was pretty traumatic back then, so but he did better this time. Thanks to all the familiar faces, some noise-cancelling headphones to help with his over-sensitive hearing and sitting far away from the engine.

I also want to mention when we got off the plane, another plane from Manchester, UK, landed right after us. I was mostly watching Max but I looked back at the passengers and looked directly two faces I had previously only seen on BBC News, Facebook and YouTube: Sarah Murray-Thompson, who needed an unrelated bone marrow donor and had a successful bone marrow transplant, and her husband Mark. I went over to them and lost all of my words. I barely squeaked out, "Tamu... It's Tamu." After greetings and extending condolences we marvelled at what the odds would be that we would all meet like this. Sarah continues to raise awareness about the need for more black and mixed ethnicity donors and funds for the African Caribbean Leukaemia Trust.

We took some much needed rest at a resort. Fortuitously, two of our friends live right next door to the resort, and we also visited a few members of our extended family and friends in the short time we had in Kingston. The Rockfort Mineral Baths were closed for the season, so my parents spread some of Emru's ashes in the water nearby. I also spread some of Emru's ashes in my late aunt's garden when we got to her place. Two cities out of three requested cities down. Montreal can wait until the snow melts.

When it was time to leave, we got Max on the plane and he did very well. His new catchphrase is "[Insert name] so proud of me?" because he heard us tell him so many times. Emru would certainly be proud of him for conquering his fear, especially dealing with a very real discomfort. In fact, when we landed he remarked that taking a plane was fun! During the later stages driving back home, he inquired about taking a plane alone.

We drove back from Florida, first stopping by family on both Beverly and Patsy's side, as well as some good friends in that state. We left the state and drove through Georgia, South Carolina, Virginia, Delaware, DC, Maryland, New Jersey and New York. We did it in two days because we were having a good time, but it was time to go home. Because we drove through the night, Max forced himself to stay awake for most of it. When he got home at 5:00 am, Max went to bed for a nap and was up very soon after, and wanted to go for a drive! Beverly and Max drove me home in the mid-morning so Max could get his fix.

Of course, we talked about Emru a lot. I think we all had our internal conversations going as well.

I'm not much of a Christmas person these days, and my family has celebrated Kwanzaa anyway since the 70s, which is a lot less about the gifts in our household and more introspective. Whether you've just finished celebrating Chanukah or Yule, are celebrating now or about to celebrate, all of these festivals are really about one thing: family, friends and community. So if you celebrate these ideas and put your ideas into practice everyday, I think everyone reading has been celebrating the entire time. We are so grateful for the help you have given our family and to the countless people you are also trying to help.

Enjoy your holiday and all the best to you and your family, from me and mine.

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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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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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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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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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August 4, 2008

USA - SheKnows, Save Giovanni and DKMS Americas team up to recruit 50000 new registrants - 15000 registrants, and 14 matches later, the Save Giovanni campaign embarks on a new campaign to recruit more potential donors by next year.

Southern California - The Battle Rages On - Chase Crawford-Quickel finds out he has a rare blood cancer called rhabdomyosarcoma, and gets a stem cell transplant for the second time in his young life. A well-written account, which includes a brief summary of both methods of donation.
"Chase,a wiry young man with a dry sense of humor, says he is willing to tell his story only in order to raise awareness about bone marrow transplants."
Birmingham, UK - Firefighter's Donor Search in Leukaemia Battle and Bone Marrow Donors Could Help Little Alishba - Two people are looking for a matching donor. While no one is guaranteed a match, Alishba is South Asian and may face a more difficult search.
"Even if none of the donors my mates encourage to come forward is a perfect match for me, they could serve to save someone else's life."

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July 3, 2008

I've been cagey ever since the day I got the news that I might have a matching donor, and I remained cagey (although slightly less so) when that donor was confirmed. The reason is simple; there are any number of reasons a donor could back out before they begin the procedure. It doesn't necessarily have to do with fear or callousness; it could be for medical reasons (if something turns up that appears to make the procedure unsafe for the donor, it's called off), or for pragmatic reasons (I recently read on a potential donor's blog about how, as a single mother, the extended hospital stay her donor centre required for the filgrastim injections wouldn't have worked out; fortunately, there were two other matching donors).

The fear that the donor might back out is heightened by the fact that as a black recipient, I have a much lower chance of finding another donor who can act as a backup—it's hard enough as it is to find one matching donor. And without a Plan B, what do you do when Plan A fails?

This is not a purely academic concern. You might remember back in May when Tamu wrote about Eunique Darby, a Syracuse teen who needed a bone marrow match and was fortunate enough to find one the day before the National Marrow Donor Program's annual Thanks Mom event. What I discovered a few weeks ago—and didn't report in the vain hope that good news would be around the corner—was that Eunique's donor had backed out. So rather than the feelings of relief and preparation for the transplant procedure, Eunique and her family have had to go back to square one.

I was unaware that the family had planned for a drive as part of the Juneteenth celebrations, but, as always, there are many ways to register. No matter where you are in the world, check out our list of registries for more information on registering in your area. Eunique needs a Plan B. For all I know, I might need one, too.

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June 24, 2008

Pat Pedraja is a young man on a mission. Pat is seeking to educate people about the bone marrow registry and register more people, especially minority donors. In Canada, it is free to register. In the US, if it is free, it is because someone else paid for the typing costs already. Someone contributed money or raised a lot of funds to ensure people would be able to register.

Unlike Canada, the US runs bone marrow drives, which are a proven method for recruiting a large number of people and diversifying the registry. Pat pledged to recruit 2007 people for 2007, and ended up recruiting over 6500 people in over 30 US cities in 3 months. This year, he is back on the road again, driving for donors.

Pat does not require a donor, but this 13-year-old 2007 CNN Hero has lived with leukemia since he was 10 years old. Pat writes:
Your vote will make a difference!
HI, it's Pat from Driving For Donors!

I need your votes for these 2 awards. To me it's about more than winning a contest, it's about saving lives! I have registered over 10,000 new marrow donors and helped find 4 life saving matches for people in need! The more people that hear about my work and register as marrow donors the more lives we can save!

I need the help of adults and kids too! Can you please take a minute to vote and pass this on to everyone you know so they can help me as well!
Teen Choice / Do Something Award voting is for 13 to 19 year olds so (if YOU'RE NOT) please forward this to your kids and ask them to vote! If I'm the top vote getter, I'll be on the TEEN CHOICE AWARDS (with Miley Cyrus) and receive $100,000 for Driving for Donors! That can save a lot of lives!

Vote everyday until August 1st!
CLICK HERE to vote for Pat for the Teen Choice Do Something Award!
Everyone can vote for the Energizer Award so Vote everyday until July 25th and pass it on so others can help!
CLICK HERE to vote for Pat for the Energizer Award! Vote Every Day until July 25th!
Help us by starting a VOTE FOR PAT Campaign on your MySpace or Website!

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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 12, 2008

This is Michelle. She is in her 20s, just got married and has been living with leukemia. She needs a bone marrow transplant and requires an unrelated donor. Project Michelle has helped increase her chances and highlighted the shortage of Asian donors in the registry.

So far, Project Michelle has helped register 8000 people at bone marrow drives. Why don't we do these in Canada? Someone remind me, please.

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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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June 6, 2008

There's a bone marrow drive on Saturday in Brooklyn. An African-American congregation is holding a bone marrow drive. The church is an important element in African-American culture, and was the hotbed of the Civil Rights movement, among other great revolutions of thought. The tradition continues.

Powerful Praise Tabernacle
708-710 Myrtle Avenue
Brooklyn, NY 11205
(718) 422-1170

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June 4, 2008

From hapihour.org:
WHAT: In-n-Out: The Drive to Increase Asian American Registered Bone Marrow Donors

WHEN: Saturday | June 14, 2008 | 10 am - 3 pm

WHERE: Chinese for Affirmative Action, Community Room
The Kuo Building
17 Walter U. Lum Place
San Francisco, CA 94108
COST: Free

To RSVP and to show your support, please visit our Facebook Event and/or our Evite.

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May 21, 2008

This is a message from Syreeta Quartey, Danny Whyte's sister. Danny had leukemia and needed a bone marrow transplant. Unfortunately, a donor could not be found in time.
On Thursday it will be a year since my brother Danny Whyte died of Leukaemia.

We will be doing a sponsored walk to raise awareness about Leukaemia and asking people to please join the bone marrow register and to raise funds for DWIB Leukaemia Trust to continue their work of starting the first bone marrow register in Africa starting in Ghana.

We are advertising this on the radio, TV and in newspapers to let people know what is happening and why they need to join.

I would like to ask everyone who is not on the register to please do so as soon as possible and don't wait for it to happen to you or someone you love.
Remembering Danny
Sponsored walk to raise funds for DWIB

From Brockwell Park to Goldcoast Restaurant
Thursday 22nd May 2008 11:30 am
Approximately 5.12 miles/8.24 km
About 1 hour 40 minutes

You can see Danny waiting while people get swabbed for bone marrow typing in Ghana courtesy of the efforts of the African Caribbean Leukaemia Trust. Nearly 800 people were typed due to their efforts during that single trip.

I showed this video to my parents and one of our friends. My friend, who lives three blocks away from me in Montreal, Canada, recognized Danny, by that time living in the UK, because they had gone to school together in Ghana. The world is smaller than you think. The international scope of bone marrow donation and transplantation brings that fact home constantly.

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May 19, 2008

Registration at this event is free for minorities. From the York Daily Record/Sunday News:
Minorities between ages 18 and 60 are needed for the National Marrow Donor Program and can be screened at a bone marrow drive 10 a.m. to 2 p.m. Saturday at the YMCA Community Center, 452 N. Beaver St. in York.

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May 18, 2008

No, I didn't get on a big boat. Earlier today I spent a few minutes as a guest on community radio station WMNF 88.5 FM's show Caribbean Cruise, speaking about the need for donors in general, and Afro-Caribbean donors in particular. I've posted the audio on the website here.

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Eunique Darby is a teenager who was one of the faces of the National Marrow Donor Program's Thanks Mom event, ending Monday, May 19. The event promotes bone marrow and registration is even more convenient, including free online registration, until May 19th.

Online promo code: THXMGARDEN413500

A likely match for a recipient is someone who shares the same or similar ethnic background. If you are of European descent in the US, your chance of finding a match is 80%. If you are of African descent it is 60%. In Canada, if you are of European descent your chance is 75%, if you are anybody else is it 10-30%.
This is a story about Eunique Darby, a 14 year old girl from Syracuse, New York, who appears to be a typical teen. She enjoys spending time with her friends, going to the mall, singing in the church choir, learning how to cook and watching basketball. Unfortunately, Eunique doesn’t get to do these activities as often as she’d like.

Five years ago Eunique was diagnosed with acute lymphoblastic leukemia (ALL), a cancer that affects the white blood cells. She experienced chronic fatique and stomach pains, prompting her parents, Enid and Johnny, to bring her to the doctor for a checkup. After noticing Eunique’s enlarged spleen and an abnormal white blood cell count, Eunique was diagnosed with leukemia.

Eunique needs a life-saving transplant to survive. Eunique has been in remission twice, but was not able to find a donor. After her third round of chemotherapy, Eunique learned last week that she is again in remission…and now, eligible for a marrow transplant.
A day before the event began, a match was found for Eunique, and I hope that person will honour their commitment. There was a pre-planned bone marrow drive held today in her honour. Hopefully, her story will help others find their match.

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Includes a clear straightforward explanation of:
Why more African-Americans are needed. 3:30
Why they are so hard to type 4:00

The interviewee is the CEO of the National Marrow Donor Program.

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From Lend a Hand, Inc.:
What: Bone Marrow Drive 1: HELP SAVE MICHELLE!
When: SATURDAY and SUNDAY, May 17 and 18, 2008
Time: 12:00 p.m. - 6:00 p.m
Location #1: Hong Kong 4 City Mall (11201 Bellaire Blvd, Houston, TX)

What: Bone Marrow Drive 2: HELP SAVE MICHELLE!
When: Sunday, May 18, 2008
Time: 9:30 AM-11:30 AM
Location #2: Nha Tho Cac Thanh Tu Dao (10610 Kingspoint Rd, Houston, TX 77075)

"Project Michelle" (www.projectmichelle.com) wants to increase the number of Asians registered in the bone marrow registry. Their goal is to enroll 15,000 Asians. Her match is most likely to come from a person of Asian descent, however, very few Asians are actually in the registry and this makes it very difficult for doctors to find them a match. This is why we need your help.

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April 24, 2008

An e-mail to the UCSF Student Activity Center regarding the April 30 drive at the University of California San Francisco led to a followup e-mail from the recruitment director of the Asian American Donor Program (AADP). (Don't let the name put you off; everyone is encouraged to register.) She pointed me to their website, which includes a calendar listing all of their upcoming drives and events, through to June 8. These aren't all in San Francisco. Other cities include Davis, Sunnyvale, San Jose and Palo Alto... to name a few. From their calendar page:
On your consent form, we will need the names, addresses and phone numbers of 2 close contacts who do not live with you and not living with each other.

Unless otherwise noted, all drives are public and open to all ethnic minorities interested in registering with the National Marrow Donor Program Registry. Due to fluctuating funding, non-minorities can be expected to pay up to $52 for registration.
The next four events take place this weekend in Sunnyvale, San Jose and San Francisco.

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April 23, 2008

The marrow drive is on the 30th, but—and this is really last-second—there's an information session today from noon to 1 p.m. From the UCSF Campus Calendar:
Wednesday, April 23, 12 –1pm, HSW 303 INFO SESSION Come for yummy Vietnamese sandwiches and information on being part of the Bone Marrow Drive scheduled for Wed. April 30. Bone marrow transplantation is used to treat cancers and other diseases. YOU can help! Sponsored by the AHC, VSA, KAHPSA, APAMSA, SNPhA and the Chancellor’s Endowment Fund.
Update: Registration is free for minorities; non-minorities may have to pay a fee. Click the graphic at left to download the event flyer as a PDF.

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April 18, 2008

This drive is part of Desi Dhamaka, the Pacific Northwest's largest South Asian cultural show, which is held at the Meany Theater. From The Daily:
In addition to the show, there is a planned bone marrow registration drive. According to the Puget Sound Blood Center, only 7 percent of the 6 million registered bone marrow donors are Asian or Pacific Islander. Patients from the same ethnic background as the donor are more likely to find a matching bone marrow type, making registration of ethnic minorities especially important.

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April 17, 2008

Free for minorities, reduced cost ($25) otherwise. From Fremont Public Library...Let's Talk!:
A blood and bone marrow drive will be held at the College of Lake County on Wednesday, April 23. The drive is sponsored by the CLC Health Center and LifeSource and will be held from 9 a.m. to 8 p.m. in Anderson Court, located in Building A on the Grayslake Campus, 19351 W. Washington St.

An oral swab is taken to determine if potential donors are a bone marrow match. There is a $25 charge for the blood marrow donation. Exempt from the fee are minority groups (Asian, Black, Latino, Middle Eastern, Native American), fire fighters, police officers and college students in health care fields.

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April 14, 2008

From KCRA 3:
Drives are open to the public and there is no charge for minorities to register.

Tuesday, April 22
No time information available
Jerry's Paint & Supply
3358 Fulton Ave., Sacramento
916-483-4661

People can also go to any location of Bloodsource to sign up.

www.bloodsource.org

1-866-822-5663

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April 13, 2008

From Wittenburg University:
Wittenberg's Phi Kappa Psi fraternity is hosting a bone marrow drive from 11 a.m.-4 p.m. Tuesday, April 15, in the Benham-Pence Student Center. Fraternity President Matt Wigton, class of 2009 from Lancaster, Ohio, was moved to organize the event when he and his brothers recently learned of Blake's leukemia diagnosis and the LaForce family's inability to find a suitable bone marrow donor due to his mixed ancestry.

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April 11, 2008

More details on the drives being held for Rianna Deol. From Bexley Times:
While doctors are especially eager to hear from Asian people donors from all backgrounds are welcome to add to the register.

The clinics are due to be held at The Arts Studio, Khalsa Avenue, Gravesend, from 10am to 2pm this Saturday, at Dartford Gurdwara, Highfields Road, Dartford, from 10am to 2pm this Sunday and at Erith Gurdwara, Mitchell Close, Belvedere, from 5pm to 8pm on Monday.

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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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$30 registration for Caucasians, free for minorities. From the Grand Junction Free Press:
Anyone else willing to help Bryson or become a match for others can come to the DoubleTree Hotel, 743 Horizon Drive, from 11 a.m. to 3 p.m. Saturday to submit a cheek swab and enter their name on the National Marrow Donor Program Registry.

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Reduced registration costs for Caucasians ($25) and free registration for minorities at a drive happening in Las Vegas this afternoon. From KVBC News 3, the location and time:
Dean Allen Elementary
Multipurpose Room
Friday, April 11, 2008
2pm to 6pm
8680 W. Hammer Lane Las Vegas, NV 89129

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March 31, 2008

From Philly.com:
Now, more than a year after his death in January 2007, Emily Greenberg is about to honor the pledge she made to her younger brother. On April 26, a bone-marrow drive will take place at the Norris Homes Community Center, at 1915 N. 11th St., where the need for donors is as great as the fear.

When an African American gets leukemia, he or she is more than nine times more likely to die than a Caucasian because of a shortage of genetic matches for bone marrow.

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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

Read the column through if you have a minute; it includes mention of an admirable effort to organize drives with other schools (Villanova, UMass, New Hampshire, Maine, Temple, Harvard, Wagner and Penn). From The Northeastern News:
On April 12, the Husky football team will have a chance to do just that. That day will see them help the Bone Marrow Institute of America in a five-hour bone marrow drive starting at noon in Solomon Court.

You can help Husky football save lives as well. Students can join the drive by showing up at Solomon Court April 10 between noon and 5 p.m., signing up beforehand at a sign-up booth that will be placed at Marino Center next week or sending an e-mail to huskyfootball@neu.edu.

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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 21, 2008

Two recent discoveries on our part point to the urgent need for more bone marrow donors, and particularly for minority donors. The African American Community Health Advisory Committee states:
However, ethnic minorities are severely underrepresented. Only about 200,000 potential donors -- about 6 percent -- are African-Americans. According to the Judie Davis Marrow Donor Recruitment Program in Oakland, this means African-Americans receive transplants from the National Marrow Registry only 3.3 percent of the time, compared to a rate of 85 to 88 percent for Caucasians.
These are figures for the US, of course, but the numbers should line up here in Canada as well (we may even be lower). The page goes on to mention ways to take action, and mentions subsidies for ethnic minorities who want to donate.

5 Towns Jewish Times, meanwhile, reports that Ezer Minion's registry in Israel (we have them listed) is the fourth largest marrow registry in the world, and that Israel has more donors per capita (5%) than anywhere else in the world. However, take a look at the comparative stats:
In comparison, the per capita statistics in other countries are less than 4% in Germany, 1.58% in the U.S., and only 0.64% in the U.K. Italy’s registry, which has slightly fewer registrants than Israel, represents only 0.55% of the local population—proportionately about one tenth of Israel’s registry membership!
Time to bring those percentages up!

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March 16, 2008

Vivian Cisneros' daughter, Laura, has a request open for an unrelated bone marrow donor. Her family is hoping people will register to increase Laura's chance of finding the right match. Laura is in a minority donor group as a person of mixed heritage - Caucasian, Hispanic and Asian (the last being a surprise). People who match this ethnic makeup will have a higher chance of matching with her.

Vivian writes:

My daughter has leukemia and is desperately looking for a bone marrow donor. She was diagnosed a year ago, went through intensive chemo (almost a month in the hospital), went through follow-up chemo, one of which she almost didn't survive, and went into remission. Now six months later the leukemia has come back. She will have to go through the intensive chemo again, and then get a bone marrow transplant. Unfortunately, she is very unique and we cannot find a match for her. They have even searched the international lists, and from 10 million people she matched 2 (and those numbers are NOT typos). The 2 people were a not so good 9 out of 10 match. Her doctor is fairly sure they won't match after they do more match testing, because the 1 that is not right, needs to be.

So, the reason I am writing to everyone is that I am asking you to please consider signing up to be a bone marrow donor. Laura's sorority sister has set up a website for Laura with more information about her and about bone marrow donations. Please take a minute to look it over, and spread the word. Donors from mixed ethnic backgrounds are especially needed.

http://bonemarrowforlaura.org/

It's heartbreaking for me to see my daughter so sick, to know that the worst part of it all is the fact that she's afraid her 2-year-old son will not remember her after she gets out of the hospital, or will resent the fact that she went away. It took months the last time around for her to be his 'boo-boo healer' again. He's a year older now, he'll be so much more aware of her absence.

Please spread the word, and if you can, sign up to be a donor or organize a bone marrow drive. These can easily be incorporated into existing blood drives, as the Red Cross in the US runs both. Thank you for listening, for caring, for acting.

Vivian

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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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March 15, 2008

Chantelle Chornoby is an aboriginal teen who is looking for help to increase her chances of finding a donor. The person most likely to match her is another First Nations person.

Cancer-fighting teen launches appeal for bone marrow donors

"There's not too many First Nations people on the donors registry, they told me, and if we get more First Nations people on there, then maybe it could help our people," she said.

"My experience can help somebody else, and that's what this campaign is all about — like, to maybe help the next person who gets leukemia, because there is such a little chance that they could find a match. Like, a full sibling, there's only a one-out-of-four chance that they would be a match."

The Burntwood Regional Health Authority, which covers northern Manitoba, is supporting Chornoby's campaign.

The link to the rest of this article is available in the Press section.

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March 14, 2008

From the Dodge City Daily Globe:
  • When: 10 a.m. until 3 p.m. Saturday.
  • Where: Our Lady of Guadalupe Catholic Church, 3231 N. 14th Ave.
  • Who is eligible to register: People who are between 18 and 60 years old, are willing to donate to any patient in need and meet the health guidelines.
  • Cost: A $25 tax-deductible tissue typing fee applies to non-minority participants, but other arrangements can be worked out for those who cannot pay the fee. A federal grant covers the entire cost of typing minority donors.
For more information: Call Karla Schubert at (620) 255-3014, Gail Chism at (816) 645-3560, the Rev. Wesley Schawe at (620) 276-2024 or 1-800-MARROW-2.

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