September 2008: SA4L partners with OneMatch, the Canadian Marrow/Stem Cell Network to run onsite swab events to register new donors. It was hardly publicized and seen as a test case.

December 2009: OneMatch announces gay Canadian men can register as stem cell donors.

February 2010: More progress. Not one drive but multiple drives on the same day. However OneMatch still doesn't have their social media skills honed and this happening is on their Facebook page, but not even listed in their media releases or anywhere on their official website. Let's show them how to get this thing done.

On Wednesday, February 10, OneMatch and partnering student groups will be organizing three separate swab events at each of the University of Toronto Campuses (Mississauga, Scarborough and Downtown) to increase the number of potential donors on the OneMatch stem cell and marrow network.

You can also set up a reminder for Wednesday on Facebook, and invite friends to inform them:

Mississauga campus http://www.facebook.com/event.php?eid=288240747348
St. George campus http://www.facebook.com/event.php?eid=256698359143
Scarborough campus http://www.facebook.com/event.php?eid=283035336517

If you live in the GTA and can show up in person, great! You can also register online and have a kit sent to your home: www.onematch.ca > click Join

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

NOT REGISTERED? You don't have to register at this event, but you can go and learn about the issue with no pressure to join.

CAN'T REGISTER? First, make sure you really can't. Some people who cannot donate blood can be stem cell donors, and vice versa. It's OK if you are still ineligible, you can still tell people and spread the word.

ALREADY REGISTERED? Please tell another friend you are and why you did it.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

MORE INFO...

The most likely match for another person is someone of the same or a similar ethnic background. More than 1 in 3 black Canadians live in the Greater Toronto Area. There are about 1450 people on the registry who are Black. We need about 77000 to 80000 to be on the Canadian registry. Even 10000 would be a great start.

No matter what your background, you can be the one match to save a life.
You could be the match to save someone’s life!

Labels: Canada, minority donors, OneMatch, swab events

1. The most likely match is someone of the same or similar ethnicity.

95% of people with sickle cell anemia are of African descent. Currently the only people who get transplants for severe cases of this disease are children and young adults. Black people of all ages with diseases like leukemia, lymphoma and aplastic anemia deserve the same chance at a transplant, often the best chance for survival if it is proposed.

2. 75% of European-Canadians find an unrelated match. Only 10-30% of "anybody else" find an unrelated match.

40% of Canadian patients who need a transplant are minorities, but as registrants they only represent 13%.

3. Due to genetic variance, 1 in 500 Europeans need to be on the registry, but 1 in 10 Africans should be on the registry worldwide.

Due to the history of our migrations, there is more genetic diversity among people who identify themselves as black, African, African-American -Canadian -Caribbean (We could be classified as the largest mixed heritage population in North America). Caribbean people are among some of the hardest to type in the world, as are people of mixed ethnicity.

4. There aren't enough of us in the Canadian registry.

0.5% of the entire registry is classified as black and less than 0.2% is classified as multiethnic.
By The Numbers 2009:

Range to begin effective matching 10000-20000
Optimal number of Black registrants required in Canada 70000-80000

New black registrants in Canada between Oct 2008 and 2009 217
Black registrants in Canada in October 2009 1433

New black registrants in Quebec between October 2008 and 2009 38
Black registrants in Quebec in October 2009 62

By the Numbers 2008

5. The shortage is worldwide.

Donors and recipients can live in different countries. So a donor can come from a rich donor pool like the US. There is a shortage of African-American registrants.

African-American registrants as of March 2009 550 000
Optimal number of African-American registrants required in US 4 million

A search can be international if no one is found in North America, but there are not enough people of African descent registered in the world. There are no registries in the Caribbean or Africa (except South Africa).

Do you want to see these numbers improve? This is where we have a role to play. Here's a problem you don't have to throw money at. Ask questions. Tell a friend about this information and ask them if they knew about it and would be willing to tell someone else. Use Twitter, Livejournal, Facebook or your blog to get the word out.

You're not of African descent or from the Caribbean? It doesn't matter, you probably know someone who is who you will be helping by making this information public knowledge. If you know me personally, I'd like the same chances as you in life if I needed to depend on the registry. It's that simple. I may never need it, but someone just like me does right now, and many will in the future.

The Extraordinary Moment Sarah Meets Her Lifesaver

Labels: Be The Match, minority donors, OneMatch

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. On any given day, 16000 people around the world are waiting on a list to find an anonymous bone marrow donor.

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, although there is often a fee associated with lab typing, you can have the costs waived by registering online for free (a new development since Summer 2009) via Be The Match, and there are additional 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 ethnicities (but the rate will go up in a room where everyone is the same 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. The most likely match within the general population is someone of the same or similar ethnicity. If you are of African descent, it is most likely your match will be, too.

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

This is where we can help. We can take what we know and tell others to combat the misinformation about the process, so that people understand how important the need is for donors to come forward and how things really work. Use Livejournal, Facebook, Twitter, MSN or your blog.

Learn more at:
Be The Match (US) www.bethematch.org
OneMatch (Canada) www.onematch.ca
Anthony Nolan Trust (UK) www.anthonynolan.org.uk

Feel free to use the Comments section to ask questions. I will answer them or find someone who can answer them.

Labels: Anthony Nolan Trust, Be The Match, free registration, OneMatch

Hi everyone,

This is just a quick note to let you know that over the summer and early fall, Vicky and I raised funds for Light the Night and are walking tonight with Beverly and some of our friends to honour these pledges and remember our loved ones. As of this writing, the team has done very well and has reached 74% of our goal. I consider this a success! Vicky and I have already surpassed our personal goals!

Our team page

Vicky's page

Tamu's Page

As of this writing, our team is at 74% of our goal. Vicky and I have already surpassed our personal goals!

You can leave comments on Vicky's page or mine. You can also see who has commented, and some of the people who donated (some have kept their donation anonymous).

Thanks to everyone who offered their support, by telling a friend, donating, or leaving a kind word in person or online.

We'll let you know how it goes :)

Tamu

Labels: LLS

Many of you know my birthday is this month. I don't need gifts and usually I ask for nothing. You still don't have to get me anything. For those who feel compelled to get something, these would be the most significant to me:

- A donation in Emru's memory to one of the organizations listed below
- Telling someone how to register as a bone marrow or peripheral stem cell donor

Thanks very much to the many recent "birthday" donors who have already made donations, as well as all the people who have donated to help Emru and in Emru's memory during 2008 ad 2009. Everybody has already done so much. I also I would like to thank my friend Maya, who signed up as a donor. Also, a big congratulations to Sarah, who just met her donor.

Thanks everyone,
Tamu

Here's the list:

ACLT (AFRICAN CARIBBEAN LEUKEMIA TRUST)
I cannot say enough about this charity. ACLT will help anyone in need, but their focus is increasing participation of ethnic minorities and people of mixed ethnicity in blood and bone marrow donation. You can find Emru's appeal on their website here: http://www.aclt.org/index.php/appeals/showappeal/17

- Online directly: http://www.aclt.org/index.php/donate/
- By Mail: Southbridge House, Southbridge Place, Croydon Surrey CR0 4HA

LEUKEMIA AND LYMPHOMA SOCIETY: LIGHT THE NIGHT
Vicky is raising money for the LLS and participating in their walk this Fall. I plan to join her team on my birthday.
If you would like to pledge her, this is the link.

http://my.e2rm.com/personalPage.aspx?SID=2219469

LEUKEMIA AND LYMPHOMA SOCIETY: TEAM IN TRAINING
Donna McGovern is also training to participate in a NYC triathlon as a member of The Leukemia & Lymphoma Society's (LLS) Team In Training. (Our mutual friend Penny was also a good friend of Emru’s.) Donna is completing this event in honour of Emru and for all individuals who are battling blood cancers.

http://pages.teamintraining.org/nyc/nyctri09/dmcgovern

BE THE MATCH (formerly THE MARROW FOUNDATION)
About half of all transplants with a National Marrow Donor Program match involve an international recipient or patient. There is a good chance Emru's donor was from the US.

- Facebook ($550 raised so far :) ): http://apps.facebook.com/causes/birthdays/98666?m=e0bc6388
- My friend Val is also celebrating on the same day, same cause: http://apps.facebook.com/causes/birthdays/98822?m=7acf6425
- Online directly on the Be The Match website: http://marrow.convio.net/site/PageNavigator/Donation_home
- Other ways to give: http://marrow.convio.net/site/PageServer?pagename=Donation_other_giving

Labels: ACLT, Be The Match, LLS, NMDP

This year's two-week Be The Match Marrowthon successfully registered over 21000 people in the United States - all for free!

US donors are usually asked to pay about $52 as a full price. Actually it costs a total of $100 to register each donor, it's just that part is funded by the registry.

However, there are ways to register for very little or for free every day.

• In the Canada, the UK, and many other countries, registration is always free.

• If you are in an ethnic group that is difficult to find matches for, go to a donor center and see if they have funds to cover your registration. They understand the extreme level of difficulty finding a donor match and the severe shortages within certain ethnic groups.
  

• Go to a bone marrow drive. Often you can register for free, but if not some of the cost will be covered by advance fundraising, and at-drive donations.
  • In NH, MA, CT, and RI, register with the CRIR for free by showing your insurance card.
  • Be The Match Bone marrow drives by state
  • DKMS bone marrow drives
• Complete an online donor form and request a free cheek swab kit from DKMS Americas that will be sent directly to your home.

• Be on the lookout for promotional codes being advertised for patients. These promotions are paid for by the patient, friends and family for a certain amount of people to register for free. Usually this person is in a difficult group to match. If you find a code, please be respectful, and only use it if you are in a same or similar ethnic group.
  

• In some areas, you can donate platelets twice to offset the cost of becoming a bone marrow donor. Inquire with your local blood donor centre.

Please keep in mind that even if you pay nothing, it still costs a lot for profile typing. If you aren't eligible, or have the extra funds, consider making a donation to the registry. You may help register someone who saves someone else's life but didn't have the money.

Photo courtesy of Save A Life Network

Labels: Be The Match, bone marrow drives, CRIR, free registration, NMDP, online registration

Still time to register for free or tell someone about the Marrowthon. You can save a life, and you don't even need to leave home to register. Fill in the form online, and a cheek swab kit will be sent directly to your home.

Labels: free registration, NMDP, online registration, United States, US

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.

Labels: bone marrow drives, conventions, free registration, New York, NMDP

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.

Labels: ACLT, blood drive, minority donors, UK

You can be the one to help save a life. Jasmina is 6 years old, and looking for a bone marrow donor. She is adopted and black, which means she does not have a family member as a first option, and she is in a donor pool that is severely underrepresented. She is one of thousands of patients every day looking for a donor.

-You can learn more about bone marrow donation. (Start with the facts on the Info tab of the Heal Emru page).

-You can tell others how to help. *** JUST PASS THIS ALONG ***

-If you are eligible you can become a bone marrow donor. You can live in another country- it doesn't matter, as long as there is a registry where you live.

-If you do register, you can tell someone you did.

If you live in New York, there is also a drive tomorrow at PS 41 in NYC.

Hope you can make it! If you can't like me, you can still get registered!

If you can make it, a bone marrow drive is a great place to get questions answered and register easily.

Labels: bone marrow drives, DKMS, minority donors, New York

Are you using Twitter?

I sent this tweet out from my Twitter feed and @healemru:

Are you a registered bone marrow donor. Tweet your friends today and tell them. Add #whyiregistered

While I was at it, I included this status on Facebook:

Tamu would like you to tell Facebookers if you registered as a bone marrow donor and why. Twitterers: http://twitter.com/healemru/statuses/1244894949 #whyiregistered.

I believe small acts can make a difference. Do you feel the same way? A lot of the misconceptions about bone marrow donation begin by talking about it. Telling someone you are registered and why you think it is important is a great way to let people know this is something they can do to to potentially save a life, and that they need not compromise themselves to make a living donation.

If you are in the Ottawa region on Saturday or know someone who is, Black History Ottawa is hosting an event which will also allow you to do the the first portion of registration as a stem cell donor and/or get your questions answered. If you register, you will get cheek swabs sent to your home in an envelope. Swab the inside of your cheeks according to the instructions and send them back.

You will also be able to meet Angela Christopher, former Montrealer, Grenadian, who has acute myeloid leukemia (AML). You may have seen her appeal on the African Caribbean Leukemia Trust (www.aclt.org) website or read about her experiences in The Spectrum, Frontonfrom, Caribbean Calendar, CHUO-FM: "Black on Black", and "Rockers". Angela is a beautiful woman Emru and I connected with when his appeal first went public and she done a lot to influence how people see patients and give them a voice.

Here's the where and when:


An afternoon of music, culture and fashion from Africa and the Caribbean. Health promotion displays on physical activity, nutrition and healthy lifestyles. Information on risks of disease and injury, sickle cell disorder, cancer, diabetes etc. Take the opportunity to check your blood type. Special performances by SIFA choir, Heru drummers and more. A partnership between Ottawa Public Health, Canadian Blood Services, Sickle Cell Disease Parents’ Support Group, and Black History Ottawa. Information: 613-580-6744 Ext. 23923.

Remember, if you are not white in Canada, you have somewhere between a 10-30% chance of finding an unrelated match. Or YOU could be someone's match. If you don't fall within this statistic, you know someone who does.

If you cannot make it, you can register online with OneMatch.

Stem Cell Awareness and the Black Community
How To Register as a Donor in Canada

Labels: Canada, events, minority donors, OneMatch, online registration

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.


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.


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.

Labels: bone marrow drives, conventions, Emru, free registration, Massachusetts, NMDP

Each year The Animation Guild, ASIFA Hollywood and Women In Animation present a non-denominational celebration of departed friends from our animation community. It will be on Saturday, February 7 at the Lasky-DeMille Barn in Hollywood across from the Hollywood Bowl. The 2008 honorees include

John Ahern, Gus Arriola, Phyllis Barnhart, Gordon Bellamy, Harriet Burns, Greg Burson, John W. Burton, Jr., Vivian Byrne, Joyce Carlson, Bob Carr, Rose Di Bucci, Charlie Downs, Ray Ellis, Joni Jones Fitts, Etsuko Fujioka, Steve Gerber, Fernando Gonzalez, Yoo Sik Ham, Larry Harmon, Margie Hermanson, Ollie Johnston, Ted Key, Eartha Kitt, Andy Knight, Harvey Korman, Lyn Kroeger, Brice Mack, Bill Melendez, David Mitton, Gary Mooney, Jim Mueller, June Nam, Ethan Ormsby, Bill Perez, Richard Pimm, Oliver Postgate, Denis Rich, Dodie Roberts, Irma Rosien, Gerard Salvio, Gina Sheppherd, Robert Smith, Jim Snider, Al Stetter, Dave Stevens, Morris Sullivan, Emru Townsend, Pat Raine Webb, Chiyoko Wergles, Bob Winquist and Justin Wright.

(Thank you, Karl Cohen)

Labels: Emru

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.

Labels: Arisia, blood drive, bone marrow drives, conventions, CRIR, Emru, free registration, Massachusetts

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.

Labels: Arisia, blood drive, bone marrow drives, conventions, CRIR, free registration, Massachusetts

Here's to new beginnings in 2009.

The seventh and last principle of Kwanzaa is faith. People turn to others for comfort, support or help, hoping another person will hear them and help them. Sometimes people just have faith that their circumstances will change for the better.

Emru knew that he might not find a match, but he hoped for the best. He put his faith in his family, his friends, and many other people, including complete strangers. Every day thousands of people turn to the bone marrow registry in the hope that someone will be there who can and is willing to help them. He hoped someone would register and then be willing to donate to him, but he knew that each person who got registered was giving hope to each person (and all the people who cared about that person). He had faith that good was being done and held out a belief that things would likely turn out positively for him, and if not, someone else. It was a great day when he found out he had a match.

I remember a phone call I had with Emru that ended in tears for both us. I gave him a picture of him dressed as one of his favourite heroes, and he said he knew he was going to get the transplant and beat the leukemia. He was right about the transplant, at least. But his faith got him very far, and mentally he was in a good place when he left us.

Faith is not always rewarded, but it is rarely rewarded without taking some form of action while maintaining an attitude that things will move into a positive place. If you want to believe in something, do so fervently, but make a change, however small, to see it come to fruition.

Faith endures: the struggle continues.

Labels: Emru, Kwanzaa

The sixth principle of of Kwanzaa is creativity.

I don't want to make another overly long post, but this was a principle dearly cherished by Emru. His love of animation, comics and writing, film were superlative. His creative energy allowed him to work on so many projects. He also cared a lot about the people behind the art he loved, and forged many friendships with those with a creative spark at every point in his life.

That creativity helped a lot this year to find his match as well. He was touched to his very core (as was I and many others) by the illustrated and photographic images people created as people tried to find ways to help spread the word about Emru and others. Emru's words also expressed what he was going through and he could have chosen to write some very angry words but did not. Friends used their words to help explain why Emru needed help and why others needed help too.

When times were tough, these words, images and other creative expressions were like anchors to reality when everything else seemed unreal.

It reminded us that people cared and had great beauty inside them, and that is what makes life is beautiful.

Labels: Emru, Kwanzaa

The fifth principle of Kwanzaa is purpose.

There are many things I can say about this, but this entry is probably the most culturally specific.

One of my concerns this year was that as a community, the African world community has accomplished many achievements on an individual and societal level, but there are still many sobering statistics that show there is work to be done.

The situation with bone marrow donation really cuts to the heart of this matter. Some of us have more mobility, better income, more choices than ever before, but even the most successful black person needing an unrelated donor ends up in the same situation as everyone else like them waiting: their odds suck. They still only have a 60% chance of finding a donor if they live in the States, and around a 20% chance if they live in Canada or the UK.

So for me, the concept of purpose is clear. It is about being able to have the same access to life as anyone else. If people want to solve this problem, they will have to take a hard look at themselves, and decide if they want to make a difference in changing the outcome in this collective struggle. Awareness and registration is a community-building project that will require allies on all fronts, but can only truly be changed from within by the community affected by it.

Labels: Kwanzaa, minority donors