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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posted by Tamu at  | 0 Comments | Links to this post

January 25, 2009

So. The bone marrow drive was a complete success.

There were 2000-2200 people estimated to attend Arisia, so we went with 20 people as a reasonable number of registrants. This is something new, and even when reactions are positive, usually only a handful register. For instance, someone in Toronto did and event where 7000 people attended and 200 registered online so they could get their kits at home. This is seen as a success although it is proportionally less than 20 people registering at Arisia. Also, many people in that 200 did not return their swabs.

Seventy-one people registered with no pressure on Saturday. There was almost always someone signing up at the table. There were sometimes 2 people but almost never 3 signing up. This made the event very orderly. The annual blood drive (which also had a record year) was a few tables away, and the fan who runs it also mentioned he has been in the registry for many years. He is also a regular platelet donor.

The Naughty Nurses performed skits on Friday night and on Saturday before other events to highlight the good work being done by the blood drive, and created a skit for marrow as well. Unfortunately, I got tied up and did not get to see it on Friday night (hmph).

Because of the success on Saturday, Darryl from the CRIR returned on Sunday and 19 more people signed up, making a total of 90 new registrants.

I also met quite a few people who were already registered. I met a very nice young woman who donated twice and saved a man's life. I met a teenager that received marrow when she was very young from a relative (unfortunately, her donor died two days later from completely unrelated circumstances, and instead of saying, "Someone saved my life in the nick of time." she had been telling people, "Someone donated to me and died two days later," making them think the donation was the cause - Sigh.)

No one was pressured into signing up. Quite a few people took information and said they did not know enough yet and wanted to learn more after the convention then decide, which is fine by me! Both Hema-Quebec and OneMatch have cited that one of the reasons they do not run drives is that people feel pressured to do it. BS. We told people it was happening, and we told people the facts.

With some preparation and the right materials available at the table, compassionate people came of their free will. The drive took up one table, and in addition to the swab kits and consent forms, a few boxes were brought with sweaters, bags and pins for registrants. I brought my pins and some of my Heal Emru business cards.

My friend Val made this happen and has begun the work for another drive next month at Boskone. She and I will be there, too.

Some people could not be marrow donors, so we directed them to the blood drive if they were eligible, and the blood drive did the same for us. Emru would not have lived to see his transplant if he had not received transfusions to keep him alive. (I say this in addition to ALL the great reasons to give blood).

The event was much more emotional for me than I thought it would be, but it felt great and I also heard many positive stories related to the issue and received lots of excellent feedback.

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posted by Tamu at  | 1 Comments | Links to this post

January 14, 2009

This is the first US bone marrow drive in which I will assist, and I look forward to meeting you and answering questions.
MAJOR UPDATE 2nd Day Added!
Sunday 11:00am
~ 3:00pm

SAVE THE DATE!
Saturday, January 17th, 2009
10:00am ~ 6:30pm
Hyatt Regency, Cambridge
Arisia 2009 Science Fiction Convention

Representatives of the Caitlin Raymond International Registry and volunteers from the fannish community will be running an information table and registry drive. Registration itself is simple and painless: all you have to do is swab your cheek and fill out a form. To register you must be between the ages of 16 and 60 and in general good health.

Legislators in several US states have passed laws that make it mandatory for most insurance companies operating in these states to pay the cost of registration. Please bring your health insurance card with you. If you live in RI, NH, or MA you can register at this event at no cost.

More than 35,000 patients per year, many of them children, are diagnosed with diseases treatable by marrow or stem cell transplant. These diseases include leukemia, lymphoma and other cancers and genetic diseases.

Many people do not consider donating because they may not know they can help, but also because they have misconceptions about the donation process. The drive is a great venue for getting your questions answered.

When someone needs a bone marrow transplant and none of their family members are a match, the registry searches for a donor whose tissue type profile is compatible. 70% of people requiring a transplant need an unrelated donor.

A person looking for a stem cell match may find one potential donor in a pool of 20,000, or 1,000,000, or more. The most likely match for someone is a person of the same or a similar ethnic background. No one is guaranteed a match, regardless of background, but ethnic minorities are especially underrepresented and patients have even less chance of finding a matching donor.Then they have to hope that person is on the registry. You might be the match necessary to save a life.


The inspiration for this drive is the thousands of people who are waiting on any given day for a donor.



One of them was Emru Townsend, a fan and critic. Instead of writing about animation, comics, and technology, last year he spent his time writing about how people could save his life, or that of someone just like him at healemru.com. This drive is in his memory.

Arisia will also be holding its annual blood drive. Less than 40% of North Americans are eligible to give blood, so if you are, please also consider helping to save lives and in a more immediate manner: http://2009.arisia.org/blooddrive.

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August 8, 2008

I won't be able to make it to Denvention this year. At first I wasn't sure if I could swing it, but when I decided I really wanted to do it, life got in the way.

I recently mentioned that science fiction, comic and animation fans have been doing a lot to help raise awareness about bone marrow and stem cell donation. For those of you who will be attending the 66th World Science Fiction convention in Denver this week, I would like to direct your attention to these items:

Robert A. Heinlein Memorial Blood Drive (Friday, August 8). You can find out more on the web page and even make an appointment in advance. For those of you reading this who do not know this late science fiction Grand Master, he popularized the term, "Pay It Forward." He believed instead of paying debts back, you could go out and do something equally good for someone else. Incidentally, Emru introduced me to RAH's work when we were kids. Like Heinlein, Emru needed blood when he fell ill - I think it's around 40 times since December.

Heal Emru stickers, flyers and buttons will be available to promote bone marrow and stem cell donation and registration: I would hand these out myself if I were present. Please pick a sticker up at the Anticipation table or a promotional table and consider placing it on your badge and telling your friends where you got it. If you need more information, consult the back of the flyer that should be lurking close by. Emru recently found a match - with lots of help, including fandom's - but over 16000 people are hoping to get the same chance and not all will.

Another great cause that has been garnering a lot of support: Match It For Pratchett folks may have a donation jar at the WesterCon 62/NA Discworld table in the fan table area during the convention. Remember, you can donate every day by just going to the website or contacting your country's leading charity dedicated to Alzheimer's research.

Many fans have big hearts, but this year I have seen it in action more than ever from a very personal level. So to anyone who reads this who is considering one or more of these suggestions, runs charity or awareness-raising events at your local convention, or just does something to help another person out at other times of the year: thank you.

Have a fantastic five days.

Do you have any good causes you know about at the convention? Let me know and I will update this message!

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