March 19, 2009

SAVE THE DATE!
Saturday, March 21st, 2009
11am - 4:30pm
LUNACON BONE MARROW DRIVE
669 Westchester Avenue
Rye Brook, NY

We are not wise, we humankind,
who live a little time and die.
What can we do against the night
but weep, and rage, and question why?
For what are we but bone and blood,
and speaking voice and loving heart?
We share what help and hope we may
Together now, before we part.
But if we do not speak, or love,
or offer blood, or bone, to save
another breathing human life
who'll live to love because we gave...
what are we then but cold, alone,
the chilling blood, the empty bone?

- Jo Walton

This spring at Lunacon, representatives of the New York Blood Center will be running an information table and bone marrow 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 18 and 60 and in general good health.

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.

Funds were donated to support this drive in memory of Barbara J. Wolfrum.

Thanks to the generosity of the Wolfrum family, 40 people will be able to register at no expense to themselves. Emru and I first became acquainted with Bill's own experience with bone marrow drives, and dealing with his mother's leukemia diagnosis on Shakesville. I have not met Bill yet, but he is my true friend. Here are some posts he made.

My Mom: A strong, brave woman fighting leukemia - can you help?

My Mom whipped me at Scrabble, like she'll whip Leukemia

The Healing of Emru

Emru

Bill's mom passed away on December 31. I was so caught up in my own grief, I somehow missed it. I felt terrible. I don't think very much about what comes next but I can't help picturing Emru and Barbara playing some great rounds of Scrabble together.

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February 12, 2009

Please consider reposting. Thank you. Do not underestimate the power of making yourself heard.

This is the second US bone marrow drive in which I will assist, and I look forward to meeting you and answering questions. This type of drive is not done in Quebec, despite how effective it can be. A person can match another person anywhere in the world, so off I go.

MAJOR UPDATE 2nd Day Added!
Sunday 10:00am ~ 2:00pm

SAVE THE DATE!
Saturday, February 14th, 2009
10:00am ~ 6:00pm
Westin Waterfront Hotel, Boston
Boskone 46: 2009 Science Fiction Convention

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.

We are not wise, we humankind,
who live a little time and die.
What can we do against the night
but weep, and rage, and question why?
For what are we but bone and blood,
and speaking voice and loving heart?
We share what help and hope we may
Together now, before we part.
But if we do not speak, or love,
or offer blood, or bone, to save
another breathing human life
who'll live to love because we gave...
what are we then but cold, alone,
the chilling blood, the empty bone?

- Jo Walton, Boskone 46 Author Guest of Honour


Representatives of the National Marrow Donor Program 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 18 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.

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, since ethnicity plays a critical role in increased chnces of matching. Then they have to hope that person is on the registry. You might be the match necessary to save a life.

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.

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.

Even if you are not eligible to give blood, you may be eligible to be a bone marrow donor, so please do not select yourself out of the process if you are interested.

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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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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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July 31, 2008

Since Emru began to tell people about his situation and that of others, there has been an enormous amount of support in the anime and science fiction convention community. Many conventions have a history of fundraising for good causes, whether it is a guest of honour's fee being given to a good cause, a blood drive, a charity auction or an ancillary party. I and my friends were too busy raising awareness at Eastercon, Anime North and more recently Otakuthon to really post about it. As Anticipation has campaigned for people to register as members of the 2009 World Science Fiction Convention in Montreal, the chair and secretary have also encouraged people to register as stem cell donors.

However, I am going to try harder to let people know when and where we or our materials will be, because every person and organization who has helped should be commended. They've been vital to getting the word out about this important message that can benefit many people right now and in the future.

You can find our flyers this weekend at Diversicon, August 1-3. The science fiction convention is committed to fan, media and cultural diversity, and located in Minneapolis, MN. One of the most culturally diverse cities in the United States, Minneapolis is also the home of the National Marrow Donor Program.

You can get our flyers here. If you will have flyers in your registration pack or promotional table of a convention, festival or conference, let us know in advance and we will try to inform others so they can keep an eye out for them.

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