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

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

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

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

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

Registration at this event is free for minorities. From the York Daily Record/Sunday News:

Minorities between ages 18 and 60 are needed for the National Marrow Donor Program and can be screened at a bone marrow drive 10 a.m. to 2 p.m. Saturday at the YMCA Community Center, 452 N. Beaver St. in York.

Labels: bone marrow drives, free registration, minority donors, Pennsylvania, US

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 the Longmont Times-Call:

Local residents can join for free during the second annual “thanks mom” Marrow Donor Drive, from 4 to 8 p.m May 23 at Longmont United Hospital. Normally, it costs $52 to join, according to the National Marrow Donor Program.

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

From News10.net:

Bloodsource will hold another bone-marrow drive on Friday, May 16 at Kaiser Hospital in Roseville at 1600 Eureka Rd., from 9:30 a.m. to 1:30 p.m.

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

From the Chicago Sun-Times:

From 6:30 a.m. to 7:30 p.m. Wednesday at the Loyola Center for Health and Fitness in Maywood, the National Marrow Donor Program will hold a bone-marrow drive on behalf of Kim and several others. It's part of a national effort called "Thanks Mom Donor Drive."

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

From The Greenville News:

When Katie-Belle Cooley of Greenville was diagnosed with infant leukemia at the tender age of 8 1/2 months, her mom knew she would need to take action. Karen Cooley enlisted the help of family, friends, and the National Marrow Donor Program to help add volunteers to the national bone marrow donor registry. Their efforts culminate on Saturday, May 17th at Our Lady of the Rosary Catholic Church located at 3710 Augusta Road from 10am until 4pm.

Labels: bone marrow drives, free registration, South Carolina, US

From the Connecticut Post:

Forget blood drives. Joseph A. Foran High School's Interact Club is going deeper with an effort to get bone marrow donors.

The club will sponsor the marrow drive from 10 a.m. to 4 p.m. Saturday at the Masonic Hall, 59 Broad St., in affiliation with the National Marrow Donor Program. Interact President Paul Wydra III, a senior at Foran, said it normally costs $60 per person to join the registry, but a special "Thanks Mom" promotion during the month of May means it's free.

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

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

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

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

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

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

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

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

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

Labels: Alabama, bone marrow drives, California, free registration, Georgia, Minnesota, Missouri, New York, Ohio, Pennsylvania, Rhode Island, UK, US, Vermont

From MyCentralJersey.com:

From 1:30 to 7 p.m. Monday at the Vermeule Community Center, 301 Clinton Ave., the North Plainfield Policemen's Benevolant Assocation and International Association of Firefighters in conjunction with the HLA Registry and Community Blood Services will hold a blood and bone marrow donor registry drive.

Appointments are available every 15 minutes during the entire event. Walk-ins are also welcome.

Labels: bone marrow drives, free registration, New Jersey, US