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.


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.


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.


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.


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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May 14, 2008

Last Saturday was my birthday, and I spent a fair bit of the day at a blood donation drive, talking to people about registering as bone marrow donors. Every time I speak to people at events I come away with a new revelation, because each event is different, and therefore the types and mindsets of the people there are different as well.

Because most of the people there were already blood donors, there was little resistance to the idea of trading some time and a little discomfort for something that could extend someone else's life. However, there was a lot of curiosity about the process of donating, and some speculation about what it would be like to get The Call—when you're told you're a potential match for someone, and asked to proceed with further testing.

Obviously I can't speak from direct experience as a donor (and I'm hoping that someday I'll be able to speak from direct experience as a recipient), but many other people have. Here are five stories from the perspective of donors, some of whom are part of that small group of people called on to donate more than once.

Technical sergeant in business of saving a life ... twice
"In this case the recipient was well for three years, and now she needs me again," Sergeant Navarro said. "So I'll donate again and again and again, and however many times they need me to help prolong her life."

Bone-marrow donation saves life
"I wouldn't think twice about doing it again."

Henrietta Leukemia Survivor Will Meet Her 'Angel on Earth'
"We had lost my father to cancer and during that two-year battle I realized I'd have done anything to help save him," says Scott-Burnside, 31. "Knowing that someone else could be saved with my bone marrow, I had to do it."

Bob's Donations
I call Cindy for the Nth time. She's gotta be getting tired of this. But this time she has the results. 6 out of 6. A perfect match. I get asked if I want to do this. "Yes!" is the immediate answer.

Williamstown resident twice a donor
"Looking back over the past 12 years, I have the feeling that I have been the lucky one for being able to donate twice and witness the devotion of some of the people in the medical world," Michael said.


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May 11, 2008

The National Marrow Donor Program's Thanks Mom event also features a page called The Donor Garden. You can add your photo to a collage of people who have registered, know a loved one who is waiting for or received a transplant, or if you have been a donor or recipient. My ID is 100249.

Add your name to the garden.

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April 15, 2008

An article in today's Ledger-Enquirer out of Columbus, Georgia highlights an interesting story—a local police officer matched two people in five years, donating his marrow both times. (One recipient was a six-month-old baby, the other a 45-year-old man.) This article is one of the few that talks about the process of donating, and it highlights that the procedure sounds much worse than it actually feels. How bad could it be if he was willing to do it again after already going through it? Here's an excerpt:
Both times Reed did his life-giving thing while asleep.

He had the doctors use a general anesthesia rather than get an epidural. About 75 percent of bone marrow donors go that route.

The surgical procedure isn't a difficult one. Doctors make two to four incisions right above the pelvic bones. Each is about a quarter of an inch long. A hollow needle is then used to draw out the liquid bone marrow, usually about a quart's worth.

"They had to punch me about 20 times when I was giving for the baby," Reed said. "I was told it about 57 times for this second one."

But there is little pain.

"I limped for a little bit afterward," he said. "There is still some tenderness back there, but it's not too bad."


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March 31, 2008

Many potential donors I've spoken to express considerable anxiety about the donation process itself, which is understandable. "Marrow" is a very powerful word. Which is why this article from the Concord Monitor is so valuable. In it, 41-year-old Bob Morrill relates the entire experience of donating, from his initial registration through to the donation itself and its aftereffects. It should be pointed out that not all marrow donations work exactly the same, but his experience lines up with what we've read elsewhere. A must-read.

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March 23, 2008

Around here, we're big believers in beating the odds. However, I was not prepared for this story.

Earlier this month, the Rochester Democrat and Chronicle published an article about Bob and Jeannine DeRoos, a couple living in Greece, who signed up to the registry to help a friend, then eventually forgot about the whole thing.
After his procedure, Bob was out of work for a couple days; the pain turned out to be surprisingly minimal.

The biggest surprise, though, came the day after his surgery. Piper Wood, a donor services specialist at the greater New York state chapter of the National Marrow Donor Program had just finished guiding Bob through his procedure when she started searching for a new match. Jeannine's name popped up on her computer screen.

"The hair on the back of my neck stood up," Wood said. The chance that anyone is a match for a stranger is slim enough; the odds that two people in a family would be called to donate are estimated at 1 in 40,000. The DeRoos are amused by the nurse's exclamation that this has never happened, but they make no big deal of the peculiarity.

"Opportunity arises," Bob said simply. "We're humbled by it."
See? Anything can happen.


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