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

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

The fourth day of Kwanzaa celebrates cooperative economics. In Canada, registering is free. In many countries, you need not worry about the cost of registration when you decide to sign up as a potential bone marrow donor. Many people worry about the cost of donation, but the donor does not pay for the donation. Instead, depending on where one lives, the donor, donor's insurance covers it, the medical system, and/or special programs run by the registry to help those in need cover it.

This year, we wrote about ways to register for free in the United States. More than half of the world's donor pool lives in the United States, but it costs money to register. There are still many ways to register for free. If you are in a minority donor pool, you can register for free if you present yourself at a donor centre and funds are available. Also, many blood collection agencies allow people to make two platelet donations in exchange for free registration. Many bone marrow drives offer subsidized registration, which means that registrants pay nothing or less than usual. Online registration with the National Marrow Donor Program in the US can be subsidized if you have been provided a promotional code. Online registration with DKMS Americas is free, but people will be asked if they can make a donation.

In all cases people should pay what they can. Why? Because nothing is ever truly free. When someone registers for free, it means the money has been paid by someone else at some point. Donations gathered at bone marrow drives go toward lab typing costs for another person. When Emru died, we asked for donations to two organizations: The National Marrow Donor Program and The African Caribbean Leukaemia Trust. The funds for the donation to the NMDP will go toward paying for someone to register in the United States. 49% of all matches in the US involve an international recipient or donor, so people are being helped everywhere.

On a community level, the funds for the African Caribbean Leukaemia Trust will go toward covering their costs for their tireless work. Their ultimate initiative is the establishment of a registry for African Caribbean and mixed ethnicity donors.

On a personal level, many people stepped forward to help Emru's appeal. People chipped in to help subsidize flyers, print ads, buttons, and much more. We couldn't have done it on the level we did without you.

Labels: ACLT, DKMS, free registration, Kwanzaa, NMDP, reduced registration cost

People have been asking me about the registration process.

The United States offers the most flexibility when it comes to finding a way to join the registry. You can register online, go to a donor center, or attend a bone marrow drive, one of the most effective methods of educating potential donors. You must be 18-60 to register or donate.

Unlike Canada and the UK, most people will pay to register. However, if you attend a subsidized bone marrow drive, your insurance policy covers registration, or you are in a minority donor pool, you may pay less or nothing. You can register online for free with DKMS every day, or get costs waived if you have a special code with the NMDP.

It's just a cheek swab to register, but you should be informed about the methods of donation, should you ever be one of the select group to match another person. To find out more:

Go to www.marrow.org
> FAQs About Joining
> Myths and Facts About Bone Marrow Donation

If you are a busy person, set aside between 15-30 minutes, and read information on the site. Use a timer so you get back to the other things you need to do.

How to register online in the United States:

1. Determine if you can be a donor.

Check your eligibility. If you are not eligible, you can still get involved by telling other people about the importance of the registry and why it is important.

2. (OPTION A) Go to www.marrow.org (10 to 15 minutes)

Fill in the online consent form and questionnaire to order your buccal swab kit online.

The questionnaire takes this amount of time so you can understand the nature of your commitment and make an informed decision. Also you will be asked some basic medical questions and about your ethnic background.

You should have your credit card ready, unless you have obtained a promo code which will let you register for free. It costs $52 to cover lab typing costs. There are methods to pay less or nothing, especially if you are in a group that is underrepresented. Contact a donor centre for details.

2. (OPTION B) Go to www.dkmsamericas.org

Email info AT dksmsamericas.org to order your buccal swab kit online.

You can register for free through DKMS. Please be advised that someone else (usually a private citizen) will cover what you cannot pay for. So if you can afford to pay some or all of the cost, pay what you can.

3. When you receive the swab kit at home, follow the instructions in the kit. (5 minutes)

The consists of an envelope with instructions, 4 cheek swabs, stickers with a reference ID, and a postage-paid envelope in which to return your samples.

If you are registering via DKMS, you will be sent a registration form that you must include with the kit, and if you can pay for a part of your lab typing, you should include a donation.

4. Send it back. You're done!

It takes about fifteen to twenty working days to get HLA-typed. Keep your address information up to date whenever you move so you can be found if you are ever needed.

You could be contacted in two months, ten years, maybe never. But if you match someone, you may be able to save someone's life by donating 2 to 5% of the stems cells in your circulating blood or bone marrow.

How To Register in Canada
How To Register in Quebec

Stem Cell Awareness - Why is it important to everyone?
Stem Cell Awareness and the Black community
By the Numbers: Still a State of Emergency

Labels: #blck, blck, blogs, DKMS, NMDP, online registration, United States

There is no funeral at Emru's request. Instead, there will be two days of visitation. Feel free to find me whether you know me or not, and ask me any questions you may have about registering as a potential donor.

The general public is welcome to join friends and family in recognizing a life well-lived.

Rideau Gardens
4275, boul. des Sources,
Dollard-des-Ormeaux, QC
H9B 2A6
Telephone: (514) 685-3344
Toll-Free: 1 (800) 657-5678

Saturday November 15
2:00 pm to 5:00 pm
7:00 pm to 9:00 pm

Sunday November 16
2:00 pm to 8:00 pm

In lieu of flowers, please learn more about how to get registered to be a bone marrow and stem cell donor. If you are eligible, consider registration, and if you are not, tell someone why it is important and how easy it is to register.

Donations can be made to:
African Caribbean Leukaemia Trust www.aclt.org
National Marrow Donor Program www.marrow.org

Labels: ACLT, Emru, NMDP

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

Labels: Anthony Nolan Trust, Canada, events, free registration, NMDP, OneMatch, online registration, UK, US

The Hendrick Marrow Program, the National Marrow Donor Program (NMDP), the NASCAR Foundation and the Jimmie Johnson Foundation have teamed up for the annual NASCAR Foundation Blood and Marrow Drive—providing you with an opportunity to register for free as a potential bone marrow donor.

On September 11, you can visit one of 30 participating race tracks to donate blood and register as a bone marrow donor; some tracks also feature other incentives, like food, t-shirts, and even the opportunity to drive around the track in your own car. (Note that four tracks are holding their events on September 12, September 13, September 21 and December 2.)

If you can't get out to a race track (or, like me, you're just not a racing fan) you can still register as a donor for free online until September 22. Either way, it's time to start your engines.

Labels: bone marrow drives, free registration, NASCAR, NMDP, US

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.

Labels: conventions, flyers, Minneapolis, NMDP

I've been cagey ever since the day I got the news that I might have a matching donor, and I remained cagey (although slightly less so) when that donor was confirmed. The reason is simple; there are any number of reasons a donor could back out before they begin the procedure. It doesn't necessarily have to do with fear or callousness; it could be for medical reasons (if something turns up that appears to make the procedure unsafe for the donor, it's called off), or for pragmatic reasons (I recently read on a potential donor's blog about how, as a single mother, the extended hospital stay her donor centre required for the filgrastim injections wouldn't have worked out; fortunately, there were two other matching donors).

The fear that the donor might back out is heightened by the fact that as a black recipient, I have a much lower chance of finding another donor who can act as a backup—it's hard enough as it is to find one matching donor. And without a Plan B, what do you do when Plan A fails?

This is not a purely academic concern. You might remember back in May when Tamu wrote about Eunique Darby, a Syracuse teen who needed a bone marrow match and was fortunate enough to find one the day before the National Marrow Donor Program's annual Thanks Mom event. What I discovered a few weeks ago—and didn't report in the vain hope that good news would be around the corner—was that Eunique's donor had backed out. So rather than the feelings of relief and preparation for the transplant procedure, Eunique and her family have had to go back to square one.

I was unaware that the family had planned for a drive as part of the Juneteenth celebrations, but, as always, there are many ways to register. No matter where you are in the world, check out our list of registries for more information on registering in your area. Eunique needs a Plan B. For all I know, I might need one, too.

Labels: Emru, minority donors, New York, NMDP

Pat Pedraja is a young man on a mission. Pat is seeking to educate people about the bone marrow registry and register more people, especially minority donors. In Canada, it is free to register. In the US, if it is free, it is because someone else paid for the typing costs already. Someone contributed money or raised a lot of funds to ensure people would be able to register.

Unlike Canada, the US runs bone marrow drives, which are a proven method for recruiting a large number of people and diversifying the registry. Pat pledged to recruit 2007 people for 2007, and ended up recruiting over 6500 people in over 30 US cities in 3 months. This year, he is back on the road again, driving for donors.

Pat does not require a donor, but this 13-year-old 2007 CNN Hero has lived with leukemia since he was 10 years old. Pat writes:

Your vote will make a difference!
HI, it's Pat from Driving For Donors!

I need your votes for these 2 awards. To me it's about more than winning a contest, it's about saving lives! I have registered over 10,000 new marrow donors and helped find 4 life saving matches for people in need! The more people that hear about my work and register as marrow donors the more lives we can save!

I need the help of adults and kids too! Can you please take a minute to vote and pass this on to everyone you know so they can help me as well!
Teen Choice / Do Something Award voting is for 13 to 19 year olds so (if YOU'RE NOT) please forward this to your kids and ask them to vote! If I'm the top vote getter, I'll be on the TEEN CHOICE AWARDS (with Miley Cyrus) and receive $100,000 for Driving for Donors! That can save a lot of lives!

Vote everyday until August 1st!

CLICK HERE to vote for Pat for the Teen Choice Do Something Award!

Labels: bone marrow drives, minority donors, NMDP, US

This is Michelle. She is in her 20s, just got married and has been living with leukemia. She needs a bone marrow transplant and requires an unrelated donor. Project Michelle has helped increase her chances and highlighted the shortage of Asian donors in the registry.

So far, Project Michelle has helped register 8000 people at bone marrow drives. Why don't we do these in Canada? Someone remind me, please.

Labels: bone marrow drives, California, minority donors, NMDP, US

Eunique Darby is a teenager who was one of the faces of the National Marrow Donor Program's Thanks Mom event, ending Monday, May 19. The event promotes bone marrow and registration is even more convenient, including free online registration, until May 19th.

Online promo code: THXMGARDEN413500

A likely match for a recipient is someone who shares the same or similar ethnic background. If you are of European descent in the US, your chance of finding a match is 80%. If you are of African descent it is 60%. In Canada, if you are of European descent your chance is 75%, if you are anybody else is it 10-30%.

This is a story about Eunique Darby, a 14 year old girl from Syracuse, New York, who appears to be a typical teen. She enjoys spending time with her friends, going to the mall, singing in the church choir, learning how to cook and watching basketball. Unfortunately, Eunique doesn’t get to do these activities as often as she’d like.

Five years ago Eunique was diagnosed with acute lymphoblastic leukemia (ALL), a cancer that affects the white blood cells. She experienced chronic fatique and stomach pains, prompting her parents, Enid and Johnny, to bring her to the doctor for a checkup. After noticing Eunique’s enlarged spleen and an abnormal white blood cell count, Eunique was diagnosed with leukemia.

Eunique needs a life-saving transplant to survive. Eunique has been in remission twice, but was not able to find a donor. After her third round of chemotherapy, Eunique learned last week that she is again in remission…and now, eligible for a marrow transplant.

A day before the event began, a match was found for Eunique, and I hope that person will honour their commitment. There was a pre-planned bone marrow drive held today in her honour. Hopefully, her story will help others find their match.

Labels: minority donors, New York, NMDP, personal appeal

Pretty darned easy, that's what we always say. But stay-at-home mom Ash recently posted on her blog about registering with the NMDP and included this photo of the swabs she received in the mail as part of the registrant testing kit. Take a look at the high-res photo to see the instructions in detail. It's only seven steps!

And, hey, Ash—thanks for registering.

Labels: NMDP

Includes a clear straightforward explanation of:
Why more African-Americans are needed. 3:30
Why they are so hard to type 4:00

The interviewee is the CEO of the National Marrow Donor Program.

Labels: minority donors, NMDP

Here's another way to get registrants and monetary donations for the National Marrow Donor Program: Throw a party! It all goes down tonight in Portland, Oregon. From The Portland Mercury:

Live music! Beer! Helping sick kids!

I think there’s gonna be a silent auction, as well as live music from Red Ray Frazier, Invisible Rockets, Blue Horns, Henry Dark, and Jesse Young and Friends. And did I mention helping sick kids, and beer?

Green Dragon Pub and Bistro, 928 SE 9th, Sunday May 18, 3 pm-11 pm or so.

Labels: bone marrow drives, free registration, NMDP, Oregon, US

The Thanks Mom event is winding to a close. While it's generally possible to find free or reduced-cost registration year-round, it's never quite as easy as during this event. From the Bastrop Daily Enterprise:

The International Paper Company in conjunction with Morehouse General Hospital are joining together to hold a bone marrow drive called the Thanks Mom Campaign from 9 a.m. to 6 p.m. on May 19 at the Louisiana Mill Learning Center.

Labels: bone marrow drives, free registration, Louisiana, NMDP, US

From KHQA:

This Tuesday the Cary Cancer Center will hold its first Bone Marrow drive. If you would like to sign up to be in the National Marrow Donor Program, the Cary Cancer Center in Hannibal is holding a free drive this Tuesday from 2 until 6 p.m. No appointments are necessary and it's easy to sign up.

Here's the contact information:
Address: 6000 Medical Drive, Hannibal , MO 63401
Tel: (913) 901-3100, (800) 366-6710

Labels: bone marrow drives, free registration, Missouri, NMDP

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

Add your name to the garden.

Labels: bone marrow drives, donor stories, free registration, NMDP, personal appeal, US

Mother's Day is a time to reflect on how important our mothers are and to celebrate them. Giving life is a powerful experience and the bond between a mother and child are not to be underestimated. Now try to magine the gift a mother receives when she learns that her critically ill child has a second chance at life. Or how a child feels if their parent needs a chance to live.

The National Marrow Donor Program (NMDP) is offering free registration during its Thanks Mom campaign, until May 19, 2008.

During the event, costs to join the Registry online or at a bone marrow drive are paid for by generous partners and contributors so that it is FREE:

- For the first 46,000 who join the registry via the NMDP.

-This includes the first 10,000 who join online via the NMDP's website.

In the US, you get the inside of your cheek swabbed. You get a kit at home or you go to a bone marrow drive or donor center. Here is a list by state of upcoming drives.

If you are not a US resident, this is still important information about the bone marrow registry. Many countries have free registry, every day. Even if you do not live in the US, people who register in the US could save the life of a person anywhere in the world, maybe even where you live. In fact, 49% of US matches involve an international recipient or donor.

There are many myths surrounding donation and registration. Many people do not even know there is an unrelated registry and that 70% who need bone marrow transplant rely on someone outside of the family. After registration, learning more and telling others is the most important key to creating a healthy registry and giving people a chance at survival.

Emru celebrated his birthday yesterday. He says that this is his birthdate "for now". If he has the opportunity to receive a transplant, this may be the day he is given life a second time around.

Labels: bone marrow drives, free registration, NMDP, US