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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November 3, 2008

The Month of November is National Marrow Awareness Month in the US. Online registration with the NMDP is free.

November 3-9, 2008 is Canadian Stem Cell Awareness Week. Go to the OneMatch site to find out how to Spread The Word.

November 17-23, 2008 is Anthony Nolan Week in the UK. Check the Anthony Nolan Trust media centre for their latest YouTube video.

So let's try and build some awareness: here are 5 important points that you should know about registration and donation.

1. 70% of people requiring a stem cell transplant need an unrelated donor.

The first choice is a family member, but more people will have to rely on a stranger.

2. Register by providing a blood sample in Quebec or the UK, or a cheek swab sample in the rest of Canada or the US.

In the US, UK and most of Canada, you can even fill in your registration online and get a kit sent to your home.

This is a free service in Canada and the UK as well as many other countries. In the US, there are ways to register for free.

3. Donation is safe, fast, and not risky.

You never donate stem cells or bone marrow at risk to your own life. Whatever is donated replenishes itself naturally in the body.

4. There are 2 ways to do it.

70% of people will donate in a process that takes a few hours and is similar to donating blood. For a few days leading up to the extraction process, the donor receives injections to produce additional stem cells in the body.

30% of people will donate by having liquid marrow extracted from within the back of the pelvic bone.

5. Many people cannot find matches.

There are 8 blood types, but for a stem cell match there are several million combinations of possible human leukocyte antigen (HLA) profiles - 150 billion different possibilities in theory.

Even though blood is important, and people who need transplants (in addition to many other people) need donated blood to survive, people with a rare blood type can probably find a match in a room with 100 people of different ethnicity. For someone looking for a stem cell match, they may need a stadium of 20000 or 50 stadiums (or more) to find a match.

Then they have to hope that person is on the registry.

The most likely match within the general population is someone of the same or similar ethnicity.


How To Register in Quebec
How To Register in Canada
How To Register Online in the United States

Stem Cell Awareness and the Black Community

By the Numbers: Still a State of Emergency

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August 25, 2008

Got back from my weekly checkup/followup from last week's fat & painful legs incident, and everyone was pleased to see that the treatments (and the resulting easier ability to move around) have greatly improved things. My white blood count, which has been out of control, even dropped down to more normal levels, probably as a result of the treatment (which means my muscles ache a lot less).

Still, it was something of a whirlwind this morning. We were stunned to arrive home before noon. (Everything, including traffic, aligned, so we had almost zero wait time for everything. This is unheard of.) So I'm a bit tired, and need to lie down before this afternoon's planned whirlwind, which you'll be hearing about later.

But when I casually glanced at previously missed news item, I couldn't let it pass. The Guardian reported on Wednesday that Adrian "Baldy" Sudbury died the night before. We've written on Adrian a few times before in passing (mostly in relation to the bone marrow donor clinics centred around him in one way or another), and his excellent Baldy's Blog has always been a delight to read, though I've never had the time to read it in the depth that I'd like.

Many people don't hear about bone marrow transplants until they or someone they know needs one. Many people, when they find out about them, try to inform as many people as possible. The Internet and its many communication services make this easier even for people without a communications background, and those of us who do also jump in if we feel we need to.

Because of our different backgrounds, different ages, and different situations, we jump into these things differently, but there's an underlying sentiment I noticed early on that I articulated a few times when talking to the press or other activists: we're all in this together. When we make these efforts to help ourselves, our friends, or our families—in short, no matter how personal the motivation—we help each other as well as future people who will need recipients. It's selfish and selfless at the same time, and many of us quickly realize that.

Even among all of our stories, Adrian's was remarkable. Here was someone who, after a time, consciously decided to stop treatment—in effect, removing the possiblity of any selfish motivation—and threw himself even harder into his activism with the time he had left. And he made excellent use of his time, meeting with PM Gordon Brown and speaking out about proper awareness and understanding of the bone marrow registering and donation procedures in schools, so that people would be better informed when they were old enough to make the choice to register.

And in every picture of him, in every word he wrote, he was smiling. Adrian's done a lot, and I think that even now that he's gone, he'll continue to do a lot. I've never met him, I've never spoken to him, I've never e-mailed him. I miss him terribly.

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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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June 29, 2008

From Pakistan Daily:
A Hounslow woman is facing a race against time to find a bone marrow donor from the Asian community that will save the life of her leukaemia-stricken niece.

Determined Monica Grewal, 37, has made an emotional plea for people to come forward and help six-year-old Rianna Deol get her desperately-needed transplant.

But because individual genetic make-up is so varied, her best chance of a match is from someone of the same ethnic background - and only 4 per cent of donors on the Anthony Nolan Trust's bone marrow register are Asian.

Mrs Grewal has urgently called for potential donors to join the register at a special clinic between midday and 4pm tomorrow (Sunday) at Saks Hair and Beauty Salon at the David Lloyd Club, Southall Lane, Hounslow.

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June 18, 2008

Today's bone marrow clinic in Huddersfield, UK was deemed a success by organizers attracting 53 people. This is the first clinic inspired directly from the challenge of Adrian "Sudders" Sudbury to educate people about bone marrow registration and donations in the short time he has left to live, after being treated unsuccessfully for two different types of leukemia (he is the only known person to have two forms simultaneously).

Two more drives will be occurring in July.

If you live in the UK or are an ex-pat, you may also be interested in signing the official 10 Downing Street e-petition before July 23, 2008 to fulfill Adrian's wish to see the basics of bone marrow donation and registration taught to teenagers in school as part of the curriculum. Please sign it only if you are from the United Kingdom.

Sign the petition

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May 26, 2008

Three clinics in the UK, courtesy of the ACLT (African Carribean Leukemia Trust). Don't let the name fool you—while the ACLT wants more minorities to register, they will happily register anyone who shows up. Times and places:
Saturday 14th June 2008

12.00 noon -5pm
Lewisham Fire station
249 Lewisham High Street
London
SE13 6NH

Sunday 6th July 2008

12.00 noon -5pm
Britannia Hotel Nottingham
St James St
Nottingham
NG1 6VN

Sunday 13th July 2008

5pm-9pm
School of Oriental and African Studies
University of London
Thornhaugh St
Russell Square
London
WC1H 0XG

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May 25, 2008

Another newspaper is getting behind Adrian Sudbury, and organizing a bone marrow drive (or as they're called in the UK, donor clinics). This one is in Sudbury's home town of Huddersfield. From the Huddersfield Daily Examiner:
To make it easy for Examiner readers to join the register we have organised a clinic which will take place at Huddersfield Methodist Mission on Lord Street from 2pm until 7pm on June 18.

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May 24, 2008

From BBC News:
The Anthony Nolan Trust is holding a clinic for people who want to register for bone marrow donation on 31 May at Tiger Tiger, 28-29 Haymarket, Piccadilly, London from 1100-1600.

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You may have heard of Adrian Sudbury, a 26-year-old journalist who is suffering from two different types of leukemia simultaneously, and has only weeks to live. He's using his remaining time advocating for more people to register as potential bone marrow donors, and the Southport Visiter is also taking up the cause:
The next blood donor session is on Thursday, June 26, from 2pm to 4pm and 5.30pm to 7.30pm in Holy Trinity Parochial Centre, Hoghton Street, Southport.

Please call 0845 7 711711 to make and appointment.

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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

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May 18, 2008

From Kent News:
The trust is holding a recruitment session for donors at Jamie’s school, Princes Plain Primary School, in Church Lane, Bromley, on Tuesday.

Lynsey Dickson, from the trust, said: "The register can never be big enough, quite simply the more people we have on the register the more chances we have of finding a lifesaving match for patients like Jamie."

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May 11, 2008

Here's a reminder of the bone marrow drives coming up over the next seven days. Many of these drives are free, as part of the National Marrow Donor Program's "Thanks Mom" event.

May 12
Columbus, Ohio - James Cancer Hospital and Solove Research Institute
Syracuse, New York - Boys & Girls Club
Sacramento, California - UC Davis Cancer Center
Kansas City, Missouri - Children’s Mercy Hospital
North Plainfield, New Jersey - Vermeule Community Center
Shoreview, Minnesota - Turtle Lake School
Rutland, Vermont - Alderman's Chevrolet

May 13
North Scituate, Rhode Island - Ponaganset Middle School
Hopkins, Minnesota - Shepherd of the Hill Church
Hannibal, Missouri - Cary Cancer Center
Manchester, Vermont - Manchester Rescue
Fair Haven, Vermont - Fair Haven Union High School

May 14
Providence, Rhode Island - Hasbro Children's Hospital
Madison, Alabama - Dublin Park

May 15
Jeffersonville, New York - St. George's Church
Liberty, New York - Liberty High School
Kansas City, Missouri - St. Charles Borromeo Parish
Minneapolis, Minnesota - Nicollet Mall Farmers Market
Middlebury, Vermont - Porter Medical Center
Huddersfield, England - Newsome South Methodist Church Hall

May 16
Rome, Georgia - Redmond Regional Medical Center
Stony Brook, New York - Stony Brook University
Philadelphia, Pennsylvania - Children's Hospital of Philadelphia
Pittsford, Vermont - Vermont Police Academy

May 17
Central Falls, Rhode Island - Wyatt Detention Facility’s Training Center
Springield, Pennsylvania - Springfield Township High School
Townshend, Vermont - Grace Cottage Hospital

May 18
Mount Holly, Vermont - Mount Holly Rescue Fair
Parkville, Missouri - St. Therese Parish
Kansas City, Missouri - Temple B’nai Jehudah
Kansas City, Missouri - Christ Church
St. Paul, Minnesota - St. Andrew's Lutheran Church
St. Paul, Minnesota - St. George Greek Orthodox Church

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May 8, 2008

From the Yorkshire Post:
The Anthony Nolan Trust and Sophie's family and friends are holding a clinic in Huddersfield next week to seek a donor for Sophie and others on the register. It will be held at Newsome South Methodist Church Hall, Birch Road, Berry Brow, Huddersfield, 3.30pm to 6.30pm on Thursday, May 15. People are urged to attend and be willing to be a donor, not just for Sophie, but anyone on the register. Those attending need to give a small blood sample to see if they are suitable.

Donors must be aged 18-40 and be in good health. For more information visit www.anthonynolan.org.uk

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May 1, 2008

From the Warrington Guardian:
The clinic will be run by the Anthony Nolan Trust and staffed by nurses from Warrington Hospital.

All you have to do is give a small blood sample which will be compared with the list of people waiting for transplants.

To register as a bone marrow donor, you must be aged between 18 and 40, be in good health, weigh more than eight stone and be willing to donate to any patient you match.

The clinic is on Wednesday, May 28, between 4pm and 8pm at the Tetley Walker Social Club, Long Lane, Orford.

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April 24, 2008

From the Derbyshire Times:
Saturday's clinic will be at Main Hall, Hope Valley College, Castleton Road, Hope, from noon to 4pm.

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April 20, 2008

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April 16, 2008

Another last-minute discovery, from the Liverpool Daily Post:
The Pall Mall Dental Clinic in Liverpool will today join up with one of the world’s largest life-saving charities in a bid to help save an eight-year-old Huyton girl.

The Anthony Nolan Trust has organised the clinic’s search for potential bone marrow donors.

It takes place at the Pall Mall dental practice between 5pm and 7pm today. The arrangement came about after the charity helped the best friend of Dr Andrew Healy, the proprietor of the dental clinic, to receive a life- saving bone marrow transplant.

For further details on being a donor, please contact The Pall Mall Dental Clinic on 0151 258 1968 or the Anthony Nolan website, www.anthonynolan.org.uk

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April 14, 2008

From the South Wales Argus:
The donor clinic will be held at Gaer Junior School between 4pm and 7pm today (Tuesday, April 15).

Anyone who joins the Anthony Nolan bone marrow register will be required to give a small sample of blood on the night.

If found to be a match, donors could be required to donate bone marrow to anyone all over the world.

Donors must be aged between 18 and 40, weigh more than eight stone, not be excessively over-weight and be in generally good health.

The Anthony Nolan Trust are particularly keen for young men to donate and people of ethnic minorities.
I'm sure they meant "young people," as gender isn't a factor in donor compatibility.

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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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This is happening at Dr Gray's Hospital, Elgin. From The Northern Scot:
Donations can still be accepted at Ward 2, along with further information on the bone marrow drive, which will take place between 4pm and 7pm at the hospital on April 22.

Potential donors must be aged between 18 and 40 inclusively, weigh at least eight stones and not be excessively overweight, and be willing to donate bone marrow to anyone worldwide.

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April 3, 2008

Six-year-old Rianna Deol has acute lymphoblastic leukaemia. Her doctors say she has just four months to receive a life-saving bone marrow transplant. From Kent Online:
Now the family, with the support of the Anthony Nolan Trust, are holding a series of clinics to give the community the chance to give Rianna the gift of life.

These clinics will be held across Dartford, Belvedere, and Gravesend. Mrs Deol said if a match is found, the procedure to donate is simple and involves a small amount of healthy bone marrow from the donor, which gives the recipient the chance to produce healthy blood cells.

A likely match for Rianna could come from anyone.

To become a donor call 020 7284 1234.

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March 19, 2008

From the Northampton Chronicle & Echo:

The Mereway Community College session will be held from 3.30pm until 7pm on Tuesday, March 25.

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March 14, 2008

From Lynn News:

"The Anthony Nolan Trust will be holding a bone marrow donor recruitment clinic at Sandringham Visitor Centre, on Wednesday, between 4.30pm and 7.30pm."

Other important points mentioned in the article:

"Mr Mason said the myth of large needles being used to extract marrow from the hip bone were unfounded and revealed the procedure is more like a blood transfusion." People tend to worry about needles (I still do, a little, even after the dozens of injections and blood draws I've had in the last four months), so I hope this is of some reassurance to potential donors.

"The main criteria for donors is that they must be aged between 18 and 40, be in good health, weigh more than eight stone (51kg), not be severely overweight and be willing to donate to any patient they ever match." Please bear in mind that age requirements and other conditions vary from country to country. Check with your country's registry for requirements before deciding you aren't qualified.

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