December 1, 2008

People have been asking me about the registration process.

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

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

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

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

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

How to register online in the United States:

1. Determine if you can be a donor.

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

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

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

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

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

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

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

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

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

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

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

4. Send it back. You're done!

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

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

How To Register in Canada
How To Register in Quebec

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

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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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April 16, 2008

About a month ago Bill Wolfrum posted on his blog about his Scrabble-loving mom's need for a bone marrow transplant in California. I e-mailed him a note and offered to help him with some of his Microsoft Word/Adobe Acrobat issues so he could get his information flyer printed, and we've been in touch ever since—that is, when we aren't busy doing things like running websites (me) or organizing bone marrow drives (him).

We've only managed to speak on the phone once, but it was a long conversation in which we compared notes on our backgrounds and experiences. He's integrated some of that conversation into a posting on on Shakesville, with the stark but accurate headline "African-Americans are dying for bone marrow donors - a call to action." Check it out.

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April 12, 2008

"This one's important..."
"The blog item I'm about to write is one of the most unusual I've ever posted here..."
So begin the blog entries of Neil Gaiman's journal and Harry McCracken's editorial for PC World's Techlog about the bone marrow registry and Emru's situation.

Many people are helping to get the word out, and bloggers seem especially willing to set aside a part of their daily conversation to discuss this matter. I think it is not only that they know or have heard of Emru, and respond to what a genuine person he is. It is also that they realize it should be a part of the daily conversation: this could happen to anyone, anywhere and the more people who are on the registry, the better everyone's chances, especially for those who come from underrepresented donor pools. The word is slow to get out in a conventional manner, so it is up to all of us to let people know.

And the last word is taken from the end of Cory Doctorow's Boing Boing entry:
"Hell, even if you don't care about this one case, being on the marrow donor registry is just a Good Thing. The next person it saves could be you."

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March 27, 2008

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

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March 22, 2008

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

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

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

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March 16, 2008

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

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